I'm highly likely to die within 5 years. How do I process this?
December 1, 2023 9:14 AM Subscribe
So, unfortunately, a followup CT scan I did recently revealed metastatic cancer (stage 4/spreading) and we're going to try immunotherapy, but I was warned by my oncologist that most people with metastatic cancer don't live much longer, so 5 years probably at most. I am so overwhelmed and grappling with guilt, too. Pointers on how to process and navigate this would be appreciated.
Firstly, I feel heavy guilt because I decided to discontinue chemo, so in a way, I feel like this is all my fault. Most people don't know of my decision, which doesn't help the guilt. To be fair, my oncologist seemed very surprised at how quickly the cancer spread, and acknowledged that even if I had continued doing chemo, the cancer might have came back, anyway—that's how aggressive it was. How do I address this guilt?
What should I do next? I'm so overwhelmed. Write a will? Travel plans? Student loan discharge/cancellation? It doesn't help that the immunotherapy is unknown—how I will tolerate it. I was told if immunotherapy doesn't work/I don't take it, then my life expectancy is 6-12 months. So, of course, I'm going to try it, but the oncologist was very realistic that most people with this kind of cancer does not live much longer, so I'm looking at maybe 3-5 years, unless immunotherapy works miracles.
This is heavy, and I'm sorry. I wish I had better news and a more uplifting question, especially considering it's December and the holidays. But it is what it is.
Yes, I broke the news to my family. They're being supportive so far, but they don't know I chose to discontinue chemo, so again, that's adding to my guilt.
Any pointers/suggestions/life tasks would be immensely helpful right now. I love you all.
Firstly, I feel heavy guilt because I decided to discontinue chemo, so in a way, I feel like this is all my fault. Most people don't know of my decision, which doesn't help the guilt. To be fair, my oncologist seemed very surprised at how quickly the cancer spread, and acknowledged that even if I had continued doing chemo, the cancer might have came back, anyway—that's how aggressive it was. How do I address this guilt?
What should I do next? I'm so overwhelmed. Write a will? Travel plans? Student loan discharge/cancellation? It doesn't help that the immunotherapy is unknown—how I will tolerate it. I was told if immunotherapy doesn't work/I don't take it, then my life expectancy is 6-12 months. So, of course, I'm going to try it, but the oncologist was very realistic that most people with this kind of cancer does not live much longer, so I'm looking at maybe 3-5 years, unless immunotherapy works miracles.
This is heavy, and I'm sorry. I wish I had better news and a more uplifting question, especially considering it's December and the holidays. But it is what it is.
Yes, I broke the news to my family. They're being supportive so far, but they don't know I chose to discontinue chemo, so again, that's adding to my guilt.
Any pointers/suggestions/life tasks would be immensely helpful right now. I love you all.
My socialism has saved me over and over and over again. Not a shred of this is your fault. It is the fault of capitalism and ableism. We are not the pain toys of some deity. You made a normal-ass decision to discontinue chemo because you are a HUMAN FUCKING BEING and you were at the end of your strength without support, because you have perfectly normal disabilities, because you are discriminated against because you are Deaf, and because your family and friends LET YOU DOWN. I am SHITFUCKINGLY sorry that you’ve had a metastatic diagnosis and I will PERSONALLY miss you if you die. Every MOLECULE of what has happened to you is structural and systemic. Read theory, read books about it. Your guilt and pain are arising from your beautiful, empathetic, tender kind heart that you have NEVER lost, not for a moment, this whole time. Dubious Dude, presente. Capitalism is a death cult. It is not, not, not your fault.
posted by The Last Sockpuppet at 9:28 AM on December 1, 2023 [103 favorites]
posted by The Last Sockpuppet at 9:28 AM on December 1, 2023 [103 favorites]
Firstly, my sincere condolences for having to face this. I haven't had to deal with anything like this ever, but I've thought a lot about the process of dying, studied a little about it while I was in grad school for social work, and looked into practical ways to make it easier on those I'll leave behind for when it happens.
If your resources allow it, you could look into an end-of-life doula which is an emerging practice to help people deal with these issues. An org I follow that writes a lot on end of life and offers resources is Order of the Good Death, which you may also want to explore to see if there's anything there that helps.
Do you have any religious affiliations? You could connect with leaders in your practice to see if they have any resources to also offer you. You could also look into support groups for people with similar circumstances.
I understand that a lot of people will not want you to think that this is your fate and 'think positive' but I've found that getting ahead of wrapping my mind around end of life has allowed me to feel less anxiety for when the time actually comes. I feel that I can allow for both optimism and realistic preparedness and I hope you can too.
Best of luck to you.
posted by greta simone at 9:28 AM on December 1, 2023 [16 favorites]
If your resources allow it, you could look into an end-of-life doula which is an emerging practice to help people deal with these issues. An org I follow that writes a lot on end of life and offers resources is Order of the Good Death, which you may also want to explore to see if there's anything there that helps.
Do you have any religious affiliations? You could connect with leaders in your practice to see if they have any resources to also offer you. You could also look into support groups for people with similar circumstances.
I understand that a lot of people will not want you to think that this is your fate and 'think positive' but I've found that getting ahead of wrapping my mind around end of life has allowed me to feel less anxiety for when the time actually comes. I feel that I can allow for both optimism and realistic preparedness and I hope you can too.
Best of luck to you.
posted by greta simone at 9:28 AM on December 1, 2023 [16 favorites]
Slightly more beyond your Q: I sent you a memail a while back bc I'm local suburban to your DC location if you're still out here. Still happy to provide transport/support/meals, etc. My sign language currently sucks from disuse. I KNOW how hard it is to accept help, but my job is pretty flexible and I will say no if I can't. I'm a boring mom of twins who is happy to provide safe bona fides.
posted by atomicstone at 9:38 AM on December 1, 2023 [73 favorites]
posted by atomicstone at 9:38 AM on December 1, 2023 [73 favorites]
I remember when you posted that you decided to discontinue chemo, and that you were at peace with that decision. I admired you then for it and I admire you now. You know your body, your life, what you can and are willing to tolerate, and you made the choice for yourself that made the most sense. That is as true today as it was then.
Please, please give yourself a break. You don't need to tell anybody that you decided not to continue it, and as kate blank pointed out above, it's really not related. I have seen more than one person suffer from chemo that was not going to save them, all it did was cause them misery. You chose what made sense. That is awesome - in the truest sense of the word.
Maybe some of the "guilt" you are feeling is just a way for your psyche to park some of the incredibly difficult feelings you are going through. I admire your strength and your openness and I just want to extend lots of love and support and encourage you as greta simone does above to find support to manage those difficult emotions and feelings in a way that is present, and doesn't cause you ancillary pain or guilt.
I'm so sorry to read this news, please don't apologize to US! You didn't do anything wrong at all. You are continuing to handle this entire situation with amazing grace, bravery, humility and strength. Sending you lots of love.
posted by pazazygeek at 9:39 AM on December 1, 2023 [35 favorites]
Please, please give yourself a break. You don't need to tell anybody that you decided not to continue it, and as kate blank pointed out above, it's really not related. I have seen more than one person suffer from chemo that was not going to save them, all it did was cause them misery. You chose what made sense. That is awesome - in the truest sense of the word.
Maybe some of the "guilt" you are feeling is just a way for your psyche to park some of the incredibly difficult feelings you are going through. I admire your strength and your openness and I just want to extend lots of love and support and encourage you as greta simone does above to find support to manage those difficult emotions and feelings in a way that is present, and doesn't cause you ancillary pain or guilt.
I'm so sorry to read this news, please don't apologize to US! You didn't do anything wrong at all. You are continuing to handle this entire situation with amazing grace, bravery, humility and strength. Sending you lots of love.
posted by pazazygeek at 9:39 AM on December 1, 2023 [35 favorites]
How do I address this guilt?
You made the best decision you could at the time.
I took my daughter off life support, based on medical recommendations. Every single time there’s an advance in stem cell research or transplants, I feel it. It’s okay to feel that moment of aaaaaugh. But breathe, remind yourself you made the best decision based on what you knew at the time.
I’m sorry dubious dude. Here reading each question.
posted by warriorqueen at 9:47 AM on December 1, 2023 [47 favorites]
You made the best decision you could at the time.
I took my daughter off life support, based on medical recommendations. Every single time there’s an advance in stem cell research or transplants, I feel it. It’s okay to feel that moment of aaaaaugh. But breathe, remind yourself you made the best decision based on what you knew at the time.
I’m sorry dubious dude. Here reading each question.
posted by warriorqueen at 9:47 AM on December 1, 2023 [47 favorites]
Everything pazazygeek said. I'm so sorry, dude.
Ditch the idea that you owe ANYONE endless nausea, the inability to keep down a morsel of food, neuropathy, or any of the other side effects of chemo. There's zero guarantee that it would have made a difference.
Do the things you want to do. Be with people you want to be with. Make a will, for sure, and look into a death doula and/or death cafés.
It's something that comes to us all. Sometimes we think we know when it will come and why, but death, like life, can be full of surprises. You've made brave decisions based on quality of life. All I can suggest is that you keep doing what you've been doing.
Oh, and fuck the student loans.
Sending many, many virtual hugs your way.
posted by kate4914 at 9:53 AM on December 1, 2023 [11 favorites]
Ditch the idea that you owe ANYONE endless nausea, the inability to keep down a morsel of food, neuropathy, or any of the other side effects of chemo. There's zero guarantee that it would have made a difference.
Do the things you want to do. Be with people you want to be with. Make a will, for sure, and look into a death doula and/or death cafés.
It's something that comes to us all. Sometimes we think we know when it will come and why, but death, like life, can be full of surprises. You've made brave decisions based on quality of life. All I can suggest is that you keep doing what you've been doing.
Oh, and fuck the student loans.
Sending many, many virtual hugs your way.
posted by kate4914 at 9:53 AM on December 1, 2023 [11 favorites]
I am very sorry to hear this and I hope you get better outcomes than currently predicted.
It just seems really unlikely that stopping chemo 3 months ago is the reason for this situation, and instead it seems more likely that metastasis was already underway during your chemo and you'd be roughly in this situation sooner rather than later.
I'd also suggest that "guilt" can be a freestanding emotion that just happens in stressful and unpredictable situations, without there actually being anything to be guilty for. We live in a culture of guilt and generally go around feeling guilty about anything in sight. Feel free to just observe that you feel guilt and just gesture toward the door, as it's not particularly useful to you or anybody else in this situation.
I think you should talk to an estate lawyer next. I know someone in PA who would probably at least give you some resources and next steps as a favor, if you want to memail me. Don't do anything about debt until you have gone through it with your own lawyer.
posted by Lyn Never at 9:54 AM on December 1, 2023 [15 favorites]
It just seems really unlikely that stopping chemo 3 months ago is the reason for this situation, and instead it seems more likely that metastasis was already underway during your chemo and you'd be roughly in this situation sooner rather than later.
I'd also suggest that "guilt" can be a freestanding emotion that just happens in stressful and unpredictable situations, without there actually being anything to be guilty for. We live in a culture of guilt and generally go around feeling guilty about anything in sight. Feel free to just observe that you feel guilt and just gesture toward the door, as it's not particularly useful to you or anybody else in this situation.
I think you should talk to an estate lawyer next. I know someone in PA who would probably at least give you some resources and next steps as a favor, if you want to memail me. Don't do anything about debt until you have gone through it with your own lawyer.
posted by Lyn Never at 9:54 AM on December 1, 2023 [15 favorites]
So sorry this is happening.
There is a silly line about people who skipped dessert on the Titaanic, but the truth is, you could die tomorrow, for all you know.
If you opt not to deal with stuff, it can get sorted out eventually. It does not have to be your mission. Especially not now. But since you asked, when my loved one got a diagnosis and passed (w/in months not years), there were some useful things done. Some suggestions:
Put your your mother or another family member's name on any bank accounts.
if you have any retirement accounts, update your beneficiary info.
A will is good, but, it can be managed without one if you are not up for that.
In time, any wishes you have should be recorded--end of life care, memorial services, etc.
As far as feeling guilty, I don't think you could have avoided this w/ chemo--at best you would have been sick and tired for months, but you could say you tried it. Let that go.
If your health allows, and there are places you want to see, plan some travel. You seem like a thoughtful person, give yourself some time and space to assess how you want to spend your time. If you have a spiritual tradition, you might feel drawn to that, or you might want to explore other views.
I don't know how student loans work, sorry.
Again, you don't know the future, none of us do.
Peace and good wishes.
posted by rhonzo at 10:15 AM on December 1, 2023 [12 favorites]
There is a silly line about people who skipped dessert on the Titaanic, but the truth is, you could die tomorrow, for all you know.
If you opt not to deal with stuff, it can get sorted out eventually. It does not have to be your mission. Especially not now. But since you asked, when my loved one got a diagnosis and passed (w/in months not years), there were some useful things done. Some suggestions:
Put your your mother or another family member's name on any bank accounts.
if you have any retirement accounts, update your beneficiary info.
A will is good, but, it can be managed without one if you are not up for that.
In time, any wishes you have should be recorded--end of life care, memorial services, etc.
As far as feeling guilty, I don't think you could have avoided this w/ chemo--at best you would have been sick and tired for months, but you could say you tried it. Let that go.
If your health allows, and there are places you want to see, plan some travel. You seem like a thoughtful person, give yourself some time and space to assess how you want to spend your time. If you have a spiritual tradition, you might feel drawn to that, or you might want to explore other views.
I don't know how student loans work, sorry.
Again, you don't know the future, none of us do.
Peace and good wishes.
posted by rhonzo at 10:15 AM on December 1, 2023 [12 favorites]
I have no answers, only admiration and respect. Hugs.
posted by terrapin at 10:16 AM on December 1, 2023 [11 favorites]
posted by terrapin at 10:16 AM on December 1, 2023 [11 favorites]
The American Cancer society or other group may have a cancer patients group.
Yes, do a will/ end of life plan and share with key people.
I'm so sorry you have this outcome, I hope you get more than 5 good years. Cancer is exacerbated by many pollutants, and is a prevalent disease that is Not Your Fault. You deserve compassion, listening, support, not blame.
posted by theora55 at 10:36 AM on December 1, 2023 [3 favorites]
Yes, do a will/ end of life plan and share with key people.
I'm so sorry you have this outcome, I hope you get more than 5 good years. Cancer is exacerbated by many pollutants, and is a prevalent disease that is Not Your Fault. You deserve compassion, listening, support, not blame.
posted by theora55 at 10:36 AM on December 1, 2023 [3 favorites]
I'm in kind of a similar boat, and I wonder all the time if I made a huge mistake in deciding not to have a stem cell transplant, which is still the standard of care for my cancer, even though every single research study shows it doesn't increase overall survival. I know it's very hard to let go of cancer guilt, but all it does is rob you of time and energy that you need for other things.
I have lots of thoughts about this, but the one thing I want to say right away is don't start digging your grave yet. Five years is a long time, there are new research developments every day, and the promising treatment I'm about to undergo was only in clinical trials five years ago. Also - this is very dependent on what kind of efforts you want to make - but I personally know several people who were out of treatment options but have survived for years because they enrolled in clinical trials and the drugs happened to work really well. So that may be an option for you. But if that doesn't interest you, that's fine too. You get to call all the shots here.
Also - just an anecdote. When I was first diagnosed seven years ago, I was sitting around with some friends, and one of them was talking extensively about his plans for the future, and though I thought he had a right to do that, it was tearing me up because I wasn't sure how much of a future I had. He developed a difficult disease and died a year ago, and I am still here.
The most helpful thing anyone said to me when I was diagnosed is, "You don't know what's going to happen." You really don't. I don't know if that will be helpful to you, and I don't want to minimize the effect of this hard news, but you really don't know where this is going to end up.
You are in my thoughts. I am pulling for you.
posted by FencingGal at 10:40 AM on December 1, 2023 [65 favorites]
I have lots of thoughts about this, but the one thing I want to say right away is don't start digging your grave yet. Five years is a long time, there are new research developments every day, and the promising treatment I'm about to undergo was only in clinical trials five years ago. Also - this is very dependent on what kind of efforts you want to make - but I personally know several people who were out of treatment options but have survived for years because they enrolled in clinical trials and the drugs happened to work really well. So that may be an option for you. But if that doesn't interest you, that's fine too. You get to call all the shots here.
Also - just an anecdote. When I was first diagnosed seven years ago, I was sitting around with some friends, and one of them was talking extensively about his plans for the future, and though I thought he had a right to do that, it was tearing me up because I wasn't sure how much of a future I had. He developed a difficult disease and died a year ago, and I am still here.
The most helpful thing anyone said to me when I was diagnosed is, "You don't know what's going to happen." You really don't. I don't know if that will be helpful to you, and I don't want to minimize the effect of this hard news, but you really don't know where this is going to end up.
You are in my thoughts. I am pulling for you.
posted by FencingGal at 10:40 AM on December 1, 2023 [65 favorites]
If you are able, traveling to Oregon and work with a licensed psilocybin therapy outlet, may be helpful.
There are lots of fuzzier, less describable ways this kind of work can help with mental health issues (I don't think it's the panacea it's currently being looked to for mental health treatment, but it is also not worthless), but one of the weird, razor sharp scalpel things that this type of work can help with is anxiety related to end of life care, and dying. Some of the first 'new' research in the last decade was around folks nearing end of life, and how dramatically it helped reduce the dread.
posted by furnace.heart at 10:57 AM on December 1, 2023 [12 favorites]
There are lots of fuzzier, less describable ways this kind of work can help with mental health issues (I don't think it's the panacea it's currently being looked to for mental health treatment, but it is also not worthless), but one of the weird, razor sharp scalpel things that this type of work can help with is anxiety related to end of life care, and dying. Some of the first 'new' research in the last decade was around folks nearing end of life, and how dramatically it helped reduce the dread.
posted by furnace.heart at 10:57 AM on December 1, 2023 [12 favorites]
"You don't know what's going to happen." You really don't.
It would take me all of my fingers and most of my toes to count the people I have known personally who were told they would have x amount of time to live and then far exceeded that. Bodies are very weird things and medicine is an inexact science.
I am ill equipped to offer any advice in this scenario other than to keep reaching out to people, including efforts to bring new friends into your life. You don't know how long you're going to be here, and there are many people in the world who will want to know you who you simply haven't met yet. You deserve to not give up on yourself, no matter what your health has to offer you.
Read theory, read books about it.
Nah. I mean, if you want, sure. Social political theory is cool and all, if you're into that, but I'm not sure it's any more a valuable use of your time to dive into the essential texts of socialism than it would be to, I don't know, get really into the Christian Bible or start crystal healing. Great if you're into that, but it's not going to solve your very real problems.
posted by phunniemee at 11:31 AM on December 1, 2023 [32 favorites]
It would take me all of my fingers and most of my toes to count the people I have known personally who were told they would have x amount of time to live and then far exceeded that. Bodies are very weird things and medicine is an inexact science.
I am ill equipped to offer any advice in this scenario other than to keep reaching out to people, including efforts to bring new friends into your life. You don't know how long you're going to be here, and there are many people in the world who will want to know you who you simply haven't met yet. You deserve to not give up on yourself, no matter what your health has to offer you.
Read theory, read books about it.
Nah. I mean, if you want, sure. Social political theory is cool and all, if you're into that, but I'm not sure it's any more a valuable use of your time to dive into the essential texts of socialism than it would be to, I don't know, get really into the Christian Bible or start crystal healing. Great if you're into that, but it's not going to solve your very real problems.
posted by phunniemee at 11:31 AM on December 1, 2023 [32 favorites]
Oh, I am so sorry to hear this.
If you are inclined, you might ask your oncologist (or other current doctor) if they can refer you to an oncological psychiatrist, or psychiatric oncologist. My family member saw a really good one, now retired. The level of interest and caring from her was amazing, she just helped with everything from medication side effects to more general thoughts and feelings.
I've watched you from afar as you've been dealing with this and I hope you'll be able to not kick yourself about the perfectly legitimate choices you have made so far. Certainly don't let doubts on this kind of level make you second-guess about asking for whatever it is that you need at any time.
posted by BibiRose at 11:39 AM on December 1, 2023 [10 favorites]
If you are inclined, you might ask your oncologist (or other current doctor) if they can refer you to an oncological psychiatrist, or psychiatric oncologist. My family member saw a really good one, now retired. The level of interest and caring from her was amazing, she just helped with everything from medication side effects to more general thoughts and feelings.
I've watched you from afar as you've been dealing with this and I hope you'll be able to not kick yourself about the perfectly legitimate choices you have made so far. Certainly don't let doubts on this kind of level make you second-guess about asking for whatever it is that you need at any time.
posted by BibiRose at 11:39 AM on December 1, 2023 [10 favorites]
I am very sorry to hear about your prognosis; know that you are a good and valuable person and a much-loved Mefite.
As an immediate first step, I would suggest finding a therapist or psychiatrist equipped to deal with the prognosis you are facing, to create the best possible support system over the coming months and years. And then, try to avoid making any major moves until your emotions have settled a bit. You have time, so there is no need to do all the things at once. Easy does it, one step at a time. There is absolutely no rush.
posted by Atrahasis at 12:00 PM on December 1, 2023 [6 favorites]
As an immediate first step, I would suggest finding a therapist or psychiatrist equipped to deal with the prognosis you are facing, to create the best possible support system over the coming months and years. And then, try to avoid making any major moves until your emotions have settled a bit. You have time, so there is no need to do all the things at once. Easy does it, one step at a time. There is absolutely no rush.
posted by Atrahasis at 12:00 PM on December 1, 2023 [6 favorites]
of all the things, worry about the student loans least, or not at all. none of your precious energy needs to be devoted to that crap.
don't let your family/friends dictate what you decide to do. they do not get to guilt you into anything about this situation. i had a friend who moved to seattle specifically for death with dignity. he had everything lined up and good to go, and then his mom guilted him into not doing it and he died shortly after anyway. and while i understand her fear of losing her son, i am still mad about it, and it added days to his suffering that he didn't deserve.
posted by misanthropicsarah at 12:19 PM on December 1, 2023 [1 favorite]
don't let your family/friends dictate what you decide to do. they do not get to guilt you into anything about this situation. i had a friend who moved to seattle specifically for death with dignity. he had everything lined up and good to go, and then his mom guilted him into not doing it and he died shortly after anyway. and while i understand her fear of losing her son, i am still mad about it, and it added days to his suffering that he didn't deserve.
posted by misanthropicsarah at 12:19 PM on December 1, 2023 [1 favorite]
With almost everyone I have seen struggling with a dangerous or terminal illness, the approach that seems to help the most is the attitude that you make the best decisions you can with the information you have at the time, and you don't look back. When it comes to treatment decisions, you almost never have all the information you need and there is rarely anything to be learned from post-mortems (so to speak), so revisiting prior decisions is unlikely to be helpful, but it is likely to make you feel worse--the last thing you need.
To reiterate and expand on what FencingGal said, average survival periods are inevitably backwards-looking (since they are based on people being treated in prior years). Cancer treatments have seen some significant breakthroughs in the last few years, and even mundane improvements in quotidian treatment decisions mean that the survival rate of people diagnosed five or ten years ago does not reflect what the experience of people diagnosed today will be. Additionally, the average is just that: an average, the median experience of a large group of people. You are an individual. The average can give you an idea of what to expect but it is only an estimation. There are always outliers. A friend's dog recently lived three years with a cancer for which the average survival is 1.5 years.
As a practical matter, you should investigate whether as a result of your diagnosis (and resulting disability), you are eligible for SSI or SSDI, especially since after two years on SSDI you are automatically eligible for Medicare.
posted by praemunire at 12:34 PM on December 1, 2023 [12 favorites]
To reiterate and expand on what FencingGal said, average survival periods are inevitably backwards-looking (since they are based on people being treated in prior years). Cancer treatments have seen some significant breakthroughs in the last few years, and even mundane improvements in quotidian treatment decisions mean that the survival rate of people diagnosed five or ten years ago does not reflect what the experience of people diagnosed today will be. Additionally, the average is just that: an average, the median experience of a large group of people. You are an individual. The average can give you an idea of what to expect but it is only an estimation. There are always outliers. A friend's dog recently lived three years with a cancer for which the average survival is 1.5 years.
As a practical matter, you should investigate whether as a result of your diagnosis (and resulting disability), you are eligible for SSI or SSDI, especially since after two years on SSDI you are automatically eligible for Medicare.
posted by praemunire at 12:34 PM on December 1, 2023 [12 favorites]
I'm so sorry Dubious - cancer sucks. I very much doubt that discontinuing chemo when you did caused this - my husband did cancer research for years and your particular cancer is shockingly aggressive for some folks. Making the choice for quality of time is sane.
I echo everyone else who has said get some mental health support and consider psilocybin therapy. I wouldn't worry about debt - do set up a will and power of attorney, patient advocate stuff if you haven't already. And try to be kind to yourself - none of this is your fault and you've navigated a horrendous situation with the best information you have. That's all anyone can do - don't second guess your choices - you made them with the information you had. Sending gentle thoughts your way.
posted by leslies at 12:35 PM on December 1, 2023 [7 favorites]
I echo everyone else who has said get some mental health support and consider psilocybin therapy. I wouldn't worry about debt - do set up a will and power of attorney, patient advocate stuff if you haven't already. And try to be kind to yourself - none of this is your fault and you've navigated a horrendous situation with the best information you have. That's all anyone can do - don't second guess your choices - you made them with the information you had. Sending gentle thoughts your way.
posted by leslies at 12:35 PM on December 1, 2023 [7 favorites]
(To give you a solid historical example, in just the past twenty years multiple myeloma, a blood cancer, went from being likely to kill you in ~1-3 years to one which many people live with for ten years or more, due to the introduction of bortezomib in 2002, additional similar drugs shortly thereafter, improvements in stem-cell therapy, and finally just most recently the introduction of CAR-T therapy [a super-sci-fi form of immunotherapy]. While these treatments don't work for everyone, someone diagnosed in, say, 2001 would probably have been given a picture of likely survival time that would be far shorter than it proved to be.)
posted by praemunire at 12:40 PM on December 1, 2023 [3 favorites]
posted by praemunire at 12:40 PM on December 1, 2023 [3 favorites]
Oh--and get your student loans discharged when you become eligible. No reason to be paying that bill. If you end up qualifying for SSDI/SSI, you are likely (but not automatically) eligible.
posted by praemunire at 12:43 PM on December 1, 2023 [3 favorites]
posted by praemunire at 12:43 PM on December 1, 2023 [3 favorites]
I’m very sorry to hear this. In case it is helpful, I just finished reading two books by Kate Bowler: Everything Happens for a Reason: And Other Lies I've Loved and No Cure for Being Human: (and Other Truths I Need to Hear). She had Stage 4 colon cancer, and wrote about her experiences coming to terms with her mortality and making use of her remaining time.
I will warn you, in No Cure for Being Human, she does go on immunotherapy and achieves remission, which she acknowledges is exceedingly rare. That may be difficult to read about, so I wanted to flag that for you. But I do think her story of living with the uncertainty of cancer and dealing with the not knowing could be a helpful perspective.
posted by bluloo at 1:09 PM on December 1, 2023 [2 favorites]
I will warn you, in No Cure for Being Human, she does go on immunotherapy and achieves remission, which she acknowledges is exceedingly rare. That may be difficult to read about, so I wanted to flag that for you. But I do think her story of living with the uncertainty of cancer and dealing with the not knowing could be a helpful perspective.
posted by bluloo at 1:09 PM on December 1, 2023 [2 favorites]
I'm sorry you're going through this.
I can speak to student loans a little bit. Depending on the nature of your loans and who holds them, if you may be able eligible for Total and Permanent Disability Discharge. This means that if you are unable to work and have a terminal prognosis, you can have your loans discharged. (They stay discharged if you recover.) As praemunire said, if you're getting SSDI, you should automatically get TPD discharge when you fill out the form. Don't give them a penny more than you have to.
If you die, your loans will also be discharged (and there's paperwork for that too.) If you have a cosigner for the loan, they may still be required to pay it.
posted by blnkfrnk at 1:14 PM on December 1, 2023 [9 favorites]
I can speak to student loans a little bit. Depending on the nature of your loans and who holds them, if you may be able eligible for Total and Permanent Disability Discharge. This means that if you are unable to work and have a terminal prognosis, you can have your loans discharged. (They stay discharged if you recover.) As praemunire said, if you're getting SSDI, you should automatically get TPD discharge when you fill out the form. Don't give them a penny more than you have to.
If you die, your loans will also be discharged (and there's paperwork for that too.) If you have a cosigner for the loan, they may still be required to pay it.
posted by blnkfrnk at 1:14 PM on December 1, 2023 [9 favorites]
Ask your doctor to connect you to a palliative care practice that focus holistically on the patient’s situation.
posted by CMcG at 1:51 PM on December 1, 2023 [4 favorites]
posted by CMcG at 1:51 PM on December 1, 2023 [4 favorites]
I nth everyone else that continuing chemo might not have made this any better, and not to beat yourself up over it. My friend's husband is discontinuing chemo, he keeps getting more tumors, there's no point.
I'm so sorry this is happening to you. You deserved better than you have gotten in this life. Especially from other people, whose shitty behavior makes me even madder to think about now.
Writing a will is probably not a bad idea, especially if you care about who gets your stuff. Travel plans, well, that'll depend on your medical treatment, how you're feeling and your money, but you might want to look into that sooner rather than later. If there's a bucket list you have, I guess now's the time to look at it. Writing down all your passwords for everything to give to your parents afterwards is also probably a good idea, along with access as to how to pay/discontinue your bills, things like that.
Beyond that, all I've really got is a helpful link that mentions the differences between palliative care and hospice. My aforementioned friend's husband, well, they have both been totally confused with regards to what the difference is and what palliative care offers (not a lot, apparently). Right now you sound like you are/will be in palliative care territory, which is a weird nebulous world of confusion as to what, if anything, they actually do (so says my friend). You'll probably have to call a lot of people to find out what palliative care actually does in your area. As for hospice when the time comes, I haven't heard anyone with complaints about that, as people seem to know how to handle hospice care pretty well. It went well with my dad, albeit it was only a few days.
posted by jenfullmoon at 1:51 PM on December 1, 2023 [2 favorites]
I'm so sorry this is happening to you. You deserved better than you have gotten in this life. Especially from other people, whose shitty behavior makes me even madder to think about now.
Writing a will is probably not a bad idea, especially if you care about who gets your stuff. Travel plans, well, that'll depend on your medical treatment, how you're feeling and your money, but you might want to look into that sooner rather than later. If there's a bucket list you have, I guess now's the time to look at it. Writing down all your passwords for everything to give to your parents afterwards is also probably a good idea, along with access as to how to pay/discontinue your bills, things like that.
Beyond that, all I've really got is a helpful link that mentions the differences between palliative care and hospice. My aforementioned friend's husband, well, they have both been totally confused with regards to what the difference is and what palliative care offers (not a lot, apparently). Right now you sound like you are/will be in palliative care territory, which is a weird nebulous world of confusion as to what, if anything, they actually do (so says my friend). You'll probably have to call a lot of people to find out what palliative care actually does in your area. As for hospice when the time comes, I haven't heard anyone with complaints about that, as people seem to know how to handle hospice care pretty well. It went well with my dad, albeit it was only a few days.
posted by jenfullmoon at 1:51 PM on December 1, 2023 [2 favorites]
Have you had genetic profiling of your tumor? That could give you more data about the chances of it responding to immunotherapy, which could give you (some) more certainty about your remaining time.
posted by bluloo at 1:52 PM on December 1, 2023 [3 favorites]
posted by bluloo at 1:52 PM on December 1, 2023 [3 favorites]
Regarding the palliative care discussion, if you’re being treated at a cancer center or large hospital system, they likely have a palliative care team as part of their services. You can see them while still receiving treatment (as opposed to hospice, which is for when you discontinue treatment). Visits with palliative care workers focus on things like nutrition, pain management, social support, and spiritual needs. As CMcG said, they provide holistic care, whereas your oncologist’s role is to treat the cancer. You should definitely pursue this, if possible.
posted by bluloo at 1:59 PM on December 1, 2023 [2 favorites]
posted by bluloo at 1:59 PM on December 1, 2023 [2 favorites]
So sorry you're going through this and agreeing that there is no guarantee at all that this wouldn't have happened if you'd continued chemo. Cancer is a numbers game and you never know exactly what the odds are you're working with.
The number one thing I think you should do is think hard about who you want making medical decisions for you. At some point, you will likely be unable to make and/or communicate decisions for yourself (either temporarily or permanently). Who do you want making decisions for you in that case? It will probably be your mom unless you designate someone else. The Five Wishes Living Will is a popular document/discussion tool for this kind of stuff, although it kind of feels like it's aimed at old people; I don't know if there's a better version for younger people. I would recommend starting an ongoing series of discussions with the person you decide will make medical decisions for you, because you won't be able to come up with every possible scenario ahead of time and you want them to have a good sense of your overall values (which may change over the next couple of years!).
For other practical stuff, I highly recommend the book What Matters Most: The Get Your Shit Together Guide to Wills, Money, Insurance, and Life’s ‘What-ifs’. Ideally I suppose it's the kind of book you read *before* you get a shitty diagnosis, but it was really useful for me and my husband when he was diagnosed with glioblastoma.
Depending on what kind of assets/debts you have, you may just be able to designate beneficiaries for your various accounts and not worry too much about a will (although still a good idea to have one if you really care about where your assets go after your death or if you're concerned people will fight over your assets). When my husband died I didn't have to use his will at all. The book explains a lot of this.
Also with some diagnoses (metastatic cancers are usually included) you can get fast-tracked for SSDI with relatively little hassle, and this might be a good option for you unless you really want to keep working. Your hospital should give you access to some kind of a social worker who would be able to get you started on this.
posted by mskyle at 2:37 PM on December 1, 2023 [7 favorites]
The number one thing I think you should do is think hard about who you want making medical decisions for you. At some point, you will likely be unable to make and/or communicate decisions for yourself (either temporarily or permanently). Who do you want making decisions for you in that case? It will probably be your mom unless you designate someone else. The Five Wishes Living Will is a popular document/discussion tool for this kind of stuff, although it kind of feels like it's aimed at old people; I don't know if there's a better version for younger people. I would recommend starting an ongoing series of discussions with the person you decide will make medical decisions for you, because you won't be able to come up with every possible scenario ahead of time and you want them to have a good sense of your overall values (which may change over the next couple of years!).
For other practical stuff, I highly recommend the book What Matters Most: The Get Your Shit Together Guide to Wills, Money, Insurance, and Life’s ‘What-ifs’. Ideally I suppose it's the kind of book you read *before* you get a shitty diagnosis, but it was really useful for me and my husband when he was diagnosed with glioblastoma.
Depending on what kind of assets/debts you have, you may just be able to designate beneficiaries for your various accounts and not worry too much about a will (although still a good idea to have one if you really care about where your assets go after your death or if you're concerned people will fight over your assets). When my husband died I didn't have to use his will at all. The book explains a lot of this.
Also with some diagnoses (metastatic cancers are usually included) you can get fast-tracked for SSDI with relatively little hassle, and this might be a good option for you unless you really want to keep working. Your hospital should give you access to some kind of a social worker who would be able to get you started on this.
posted by mskyle at 2:37 PM on December 1, 2023 [7 favorites]
I think others have responded really well above, so I just want to send my love and care to you. Guilt is a natural feeling. Don't beat yourself up about feeling it. Or for your decision. You are so brave and Bravo to you for your choice. You did the right thing for you. I am tearing up reading this because I always enjoy reading your posts and this feels so gutwrenching. Love and hugs if you want them. 🤗
posted by AnyUsernameWillDo at 2:41 PM on December 1, 2023 [3 favorites]
posted by AnyUsernameWillDo at 2:41 PM on December 1, 2023 [3 favorites]
To give you a solid historical example, in just the past twenty years multiple myeloma, a blood cancer, went from being likely to kill you in ~1-3 years to one which many people live with for ten years or more
I have multiple myeloma, and there are quite a few people in my online cancer support group who were told they had two years to live at least fifteen years ago.
(I know I've suggested this to you before, and maybe you have a really good reason for not doing it, but I think you would really benefit from joining the colon cancer support group at SmartPatients.com. If you try it and hate it [and maybe you already did], you can always quit.)
Also, I would strongly suggest getting a second opinion at an NCI cancer center if you haven't done that already.
posted by FencingGal at 2:45 PM on December 1, 2023 [10 favorites]
I have multiple myeloma, and there are quite a few people in my online cancer support group who were told they had two years to live at least fifteen years ago.
(I know I've suggested this to you before, and maybe you have a really good reason for not doing it, but I think you would really benefit from joining the colon cancer support group at SmartPatients.com. If you try it and hate it [and maybe you already did], you can always quit.)
Also, I would strongly suggest getting a second opinion at an NCI cancer center if you haven't done that already.
posted by FencingGal at 2:45 PM on December 1, 2023 [10 favorites]
I am so very sorry to hear this news. This internet stranger wants you to let go of any guilt to the best of your ability. Cancer sucks. Make the most of your time, and that can mean anything from travel to spending time with the people you love, or doing nothing at all. You are a valued person in the world. Do not let your family dictate your decisionmaking.
Also fuck cancer. I am thinking of you.
posted by computech_apolloniajames at 3:48 PM on December 1, 2023 [3 favorites]
Also fuck cancer. I am thinking of you.
posted by computech_apolloniajames at 3:48 PM on December 1, 2023 [3 favorites]
Others have already offered such good guidance on important things to get in order while trying to remember that you can't entirely predict what is going to happen.
I just want to add to the wishes of support, as someone who has been rooting for you, and will continue to do so.
posted by fies at 4:23 PM on December 1, 2023 [3 favorites]
I just want to add to the wishes of support, as someone who has been rooting for you, and will continue to do so.
posted by fies at 4:23 PM on December 1, 2023 [3 favorites]
_dude - I get the guilt, that’s where I went when I got my diagnosis of a rare, aggressive cancer three years ago. I voiced it with my team of doctors, and I’d like to quote one of them:
“No! You did not do *anything* to cause this cancer!”
I agree with others who have said that’s where I mind goes when we get news like this.
Immunotherapy can be fuckin’ magic - but discuss with your oncologist detail what the sides effects are, and how to tell if you’ve got one. Had I known that *this* is what “extreme muscle weakness” means/looks like, mayyybe I would not have had the crisis I did.
Also, 5 years in a Long Time in cancer years. Advances in care for metastatic cancers is advancing by leaps every six months or so.
I’m so bummed you got this news. It’s so hard to deal with this shit. Take the drugs. Live your life. You owe no one any explanation about past decisions. My heart is truly with you.
I wish you peace.
posted by dbmcd at 5:49 PM on December 1, 2023 [8 favorites]
“No! You did not do *anything* to cause this cancer!”
I agree with others who have said that’s where I mind goes when we get news like this.
Immunotherapy can be fuckin’ magic - but discuss with your oncologist detail what the sides effects are, and how to tell if you’ve got one. Had I known that *this* is what “extreme muscle weakness” means/looks like, mayyybe I would not have had the crisis I did.
Also, 5 years in a Long Time in cancer years. Advances in care for metastatic cancers is advancing by leaps every six months or so.
I’m so bummed you got this news. It’s so hard to deal with this shit. Take the drugs. Live your life. You owe no one any explanation about past decisions. My heart is truly with you.
I wish you peace.
posted by dbmcd at 5:49 PM on December 1, 2023 [8 favorites]
I am so very sorry to hear about this. I hate cancer with every fiber of my being. Don't be hard on yourself - you made/are making the best decisions you can for yourself.
I think you should do anything you've always wanted to do, now. Get out and live, like we all should, really, enjoy every day. There's so many things I want to say, encourage, rally for you. No one knows what the future holds, so do whatever makes you happy and at peace.
I'm holding you in my thoughts.
posted by annieb at 5:58 PM on December 1, 2023 [1 favorite]
I think you should do anything you've always wanted to do, now. Get out and live, like we all should, really, enjoy every day. There's so many things I want to say, encourage, rally for you. No one knows what the future holds, so do whatever makes you happy and at peace.
I'm holding you in my thoughts.
posted by annieb at 5:58 PM on December 1, 2023 [1 favorite]
Dubious-I have never posted to any of your questions, but I have followed your posts for years. Your issues with family/friends were something I identified with.
Everything that everyone has already said x100. Please don't waste your time with guilt, student loans or family expectations.
I am rooting for you, no matter what happens. Fuck Cancer and you take good care of yourself.
posted by 58 at 6:23 PM on December 1, 2023 [10 favorites]
Everything that everyone has already said x100. Please don't waste your time with guilt, student loans or family expectations.
I am rooting for you, no matter what happens. Fuck Cancer and you take good care of yourself.
posted by 58 at 6:23 PM on December 1, 2023 [10 favorites]
I'm so sorry. This is awful, there's no way around that. But I would try not to ruminate on medical what-ifs. With such an aggressive cancer, continuing chemo might not have made much of a difference in the end, medically speaking. Remember that you chose to discontinue chemo because it was what you wanted, for your life. It was an act of self care, an assertion of autonomy. If this had gone the other way, you would probably feel proud of making that choice for yourself, or at least at peace, and you would have every right to feel that. There's no reason to stop feeling it just because of a twist of medical fate.
Consider how your self-talk might change if you somehow learned for sure that the chemo wouldn't have prevented this outcome. Would it help to adopt that assumption and mindset, going forward? For all you know, it's the truth.
There are also other ways to frame this. One of the very few advantages of being terminally ill on a tight timeline is that you are starting to disentangle from the material world; you are being freed to exist purely as yourself. You are shedding most of the norms and obligations that bind us throughout ordinary life.
This means relief from all kinds of emotional debts. It means that guilt, especially about morally neutral or positive acts - e.g., personal medical choices - no longer has to take up any space in your life. So what if you've violated some perceived obligation to relatives? Since guilt will not travel with you past this existence, it seems you're going to be setting down its burden soon either way. In which case, there's no reason to carry it any longer than you have to during this strange, precious, transitional time.
Finally: if you have any curiosity about psychedelic therapy, I would invite you trust that instinct now. I wish I could give a specific recommendation, but legal issues make it harder than it should be to find this kind of care. I might start by reaching out to some of the organizations listed here to ask about referrals or avenues for psychedelic support for terminal illness.
Peace to you, now.
posted by desert outpost at 7:13 PM on December 1, 2023 [2 favorites]
Consider how your self-talk might change if you somehow learned for sure that the chemo wouldn't have prevented this outcome. Would it help to adopt that assumption and mindset, going forward? For all you know, it's the truth.
There are also other ways to frame this. One of the very few advantages of being terminally ill on a tight timeline is that you are starting to disentangle from the material world; you are being freed to exist purely as yourself. You are shedding most of the norms and obligations that bind us throughout ordinary life.
This means relief from all kinds of emotional debts. It means that guilt, especially about morally neutral or positive acts - e.g., personal medical choices - no longer has to take up any space in your life. So what if you've violated some perceived obligation to relatives? Since guilt will not travel with you past this existence, it seems you're going to be setting down its burden soon either way. In which case, there's no reason to carry it any longer than you have to during this strange, precious, transitional time.
Finally: if you have any curiosity about psychedelic therapy, I would invite you trust that instinct now. I wish I could give a specific recommendation, but legal issues make it harder than it should be to find this kind of care. I might start by reaching out to some of the organizations listed here to ask about referrals or avenues for psychedelic support for terminal illness.
Peace to you, now.
posted by desert outpost at 7:13 PM on December 1, 2023 [2 favorites]
Response by poster: Wow, thank you for all of the superbly helpful and emphatic answers.
This response is going to focus solely on this one part:
Immunotherapy can be fuckin’ magic - but discuss with your oncologist detail what the sides effects are, and how to tell if you’ve got one. Had I known that *this* is what “extreme muscle weakness” means/looks like, mayyybe I would not have had the crisis I did.
My oncologist said that it was very highly likely that the only effect I'd experience from immunotherapy would be mild fatigue, with very small chances of other effects, but she emphasized the chances were very small. I would be given a double dose every 6 weeks, with continued monitoring (CT scans, bloodwork).
I'm still processing all of your responses, but wanted to respond to the immunotherapy bit, because I agree, it does sound like fuckin' magic, but how it will actually turn out is to be determined. I just hope it's not one of those "too good to be true" situations.
posted by dubious_dude at 7:17 PM on December 1, 2023 [8 favorites]
This response is going to focus solely on this one part:
Immunotherapy can be fuckin’ magic - but discuss with your oncologist detail what the sides effects are, and how to tell if you’ve got one. Had I known that *this* is what “extreme muscle weakness” means/looks like, mayyybe I would not have had the crisis I did.
My oncologist said that it was very highly likely that the only effect I'd experience from immunotherapy would be mild fatigue, with very small chances of other effects, but she emphasized the chances were very small. I would be given a double dose every 6 weeks, with continued monitoring (CT scans, bloodwork).
I'm still processing all of your responses, but wanted to respond to the immunotherapy bit, because I agree, it does sound like fuckin' magic, but how it will actually turn out is to be determined. I just hope it's not one of those "too good to be true" situations.
posted by dubious_dude at 7:17 PM on December 1, 2023 [8 favorites]
Talking to other people with terminal diagnosis and life limiting is going to be the most helpful, especially in person where you can get body language and a sort of animal comfort/closeness. You can be honest about the hard things in a way that people not experiencing this stuff cannot comprehend yet.
Sorting out finances and making a decent Will and funeral stuff is something I have found very helpful in reducing stress around serious illness. Knowing that was taken care of and I didn’t leave a mess for people I live was super calming. Some people felt like I was being pessimistic/morbid but that’s their emotional fear talking.
I hope for a long life but having come close a few times, and expecting based on medical statistics to at some point soon to lose that - expecting death in practical ways hasn’t hurt my love of life. I just don’t make very long term plans!
posted by dorothyisunderwood at 7:25 PM on December 1, 2023 [2 favorites]
Sorting out finances and making a decent Will and funeral stuff is something I have found very helpful in reducing stress around serious illness. Knowing that was taken care of and I didn’t leave a mess for people I live was super calming. Some people felt like I was being pessimistic/morbid but that’s their emotional fear talking.
I hope for a long life but having come close a few times, and expecting based on medical statistics to at some point soon to lose that - expecting death in practical ways hasn’t hurt my love of life. I just don’t make very long term plans!
posted by dorothyisunderwood at 7:25 PM on December 1, 2023 [2 favorites]
Despite knowing the risks, a lot of people choose to ride motorcycles because it enhances their quality of life.
We are all just doing our best to live the best lives we can with the hands we are dealt.
posted by Chrysalis at 8:35 PM on December 1, 2023
We are all just doing our best to live the best lives we can with the hands we are dealt.
posted by Chrysalis at 8:35 PM on December 1, 2023
I don't know if this will make you feel better but I want you to think about it -
My cousin died of pancreatic cancer awhile back. She had about three years from diagnosis to death.
She lived her life relatively normally. No crazy trips, she continued to work part time, spent a lot of time at home with her children.
About a year in, my family and I had the same odd cognitively disonant observation: "It REALLY seems like Jen always had cancer." Two years in, "Jeeze, Jen has lived a long time". Three years in: "Wow, is Jen just going to go on living forever?"
Time is a flat circle. Those last three years of her life were some kind of time dilation, in our memories of Jen. They went on forever in the best way.
It sounds so facile but maybe when a microscope is placed on your lifespan it really does make that time count 1000x more.
I hope that the time you have is happy and full of life. I am sorry this happened to you.
posted by pintapicasso at 6:53 AM on December 2, 2023 [3 favorites]
My cousin died of pancreatic cancer awhile back. She had about three years from diagnosis to death.
She lived her life relatively normally. No crazy trips, she continued to work part time, spent a lot of time at home with her children.
About a year in, my family and I had the same odd cognitively disonant observation: "It REALLY seems like Jen always had cancer." Two years in, "Jeeze, Jen has lived a long time". Three years in: "Wow, is Jen just going to go on living forever?"
Time is a flat circle. Those last three years of her life were some kind of time dilation, in our memories of Jen. They went on forever in the best way.
It sounds so facile but maybe when a microscope is placed on your lifespan it really does make that time count 1000x more.
I hope that the time you have is happy and full of life. I am sorry this happened to you.
posted by pintapicasso at 6:53 AM on December 2, 2023 [3 favorites]
I have no words of wisdom for you. But I have been following your journey and just wish to express my support.
posted by NotLost at 8:27 AM on December 2, 2023 [3 favorites]
posted by NotLost at 8:27 AM on December 2, 2023 [3 favorites]
I am so sorry to hear this news, dubious_dude.
My dad spent a lot of time in his last year of life settling his affairs. I think it brought him some measure of peace to do that, although it was hard for me to see him spending his limited energy in this way. If I could relive that year for him I’d see him spend more of that time with his siblings and his best friends.
One thing I learned from his illness and death is how big of a blessing it is to have one medical provider you can trust to unify the story for you and help you make your decisions. He had a lot of specialists, and none of them was able or willing to help him understand the full picture of his condition. His primary care provider did, though. I hope that you have a single person you can go to for this.
posted by eirias at 8:28 AM on December 2, 2023 [2 favorites]
My dad spent a lot of time in his last year of life settling his affairs. I think it brought him some measure of peace to do that, although it was hard for me to see him spending his limited energy in this way. If I could relive that year for him I’d see him spend more of that time with his siblings and his best friends.
One thing I learned from his illness and death is how big of a blessing it is to have one medical provider you can trust to unify the story for you and help you make your decisions. He had a lot of specialists, and none of them was able or willing to help him understand the full picture of his condition. His primary care provider did, though. I hope that you have a single person you can go to for this.
posted by eirias at 8:28 AM on December 2, 2023 [2 favorites]
In my personal opinion, the only time you owe other people anything regarding your personal health decisions is when you are directly responsible for their care, like when you have minor children. I totally understand, from reading some of your past questions, why you would be feeling guilt right now - your family doesn’t sound like it operates with that same ethos, especially regarding you and the messages they give you about what they think you owe them. But if it helps, here’s another voice for giving them whatever level of detail you are comfortable with and that helps you meet your emotional and material needs, getting rid of any expectations around “should” or owing anyone else those details. (And if a medical detail is protected by HIPAA, the US government also agrees with me!) This is a time to focus on yourself, your needs, and your care.
Also, I suspect the phrase “I understand that this is also a difficult situation for you, because you care about me. But I need you to express your care for me by finding someone else to help you process your emotions around my prognosis.” or some variant will come in handy in the coming months. Or ask your medical team for links to resources for families that you can preemptively provide, that will explain the onion model (care in, dump out) and give links for resources they can use for themselves.
posted by eviemath at 9:20 AM on December 2, 2023 [5 favorites]
Also, I suspect the phrase “I understand that this is also a difficult situation for you, because you care about me. But I need you to express your care for me by finding someone else to help you process your emotions around my prognosis.” or some variant will come in handy in the coming months. Or ask your medical team for links to resources for families that you can preemptively provide, that will explain the onion model (care in, dump out) and give links for resources they can use for themselves.
posted by eviemath at 9:20 AM on December 2, 2023 [5 favorites]
Just adding a voice from a pathology dropout that skipping that last cycle of chemo is almost certainly not what caused this. Let’s say you had done the last cycle—it would have nuked a lot more malignant cells, but there would STILL have been little pockets of metastatic cells lurking around your body and waiting to cause trouble.
Seconding someone’s suggestion above to get evaluated at an NCI cancer center. You don’t have to follow through on any of their recommendations, but at least you can say you’ve considered all options.
Also seconding a mention of clinical trials above. Now, this will depend on your personal disposition, so it may not work for you at all, but it’s a way to get some advancement of science out of your shitty situation.
Also feel free to NOT set your affairs in order and just live, if that’s more your speed.
posted by 8603 at 9:48 AM on December 2, 2023 [2 favorites]
Seconding someone’s suggestion above to get evaluated at an NCI cancer center. You don’t have to follow through on any of their recommendations, but at least you can say you’ve considered all options.
Also seconding a mention of clinical trials above. Now, this will depend on your personal disposition, so it may not work for you at all, but it’s a way to get some advancement of science out of your shitty situation.
Also feel free to NOT set your affairs in order and just live, if that’s more your speed.
posted by 8603 at 9:48 AM on December 2, 2023 [2 favorites]
You might want to research some of the alternative treatments for cancer out there. There are some interesting advances in cancer treatment as a result of some of the COVID-19 treatments.
posted by summerstorm at 8:41 PM on December 2, 2023
posted by summerstorm at 8:41 PM on December 2, 2023
Oh, Dude. I had cancer and was led to believe I might be terminal, years ago, and I remember all the terror, confusion, rage, despair, etc. I'm so sorry you're going through this.
We've all known or heard about cancer patients who were told they had six months and then lived many years. It does happen. I say this partly to offer you some hope, but also to remind you that you need to try and plan for dying while also planning for not dying. You should do the things you've always wanted to do, carpe diem, etc., but don't make all of your decisions based on the assumption that you won't be here later to deal with the consequences. Don't blow all your money. Don't rashly confess secrets you might live to regret. Go crazy, certainly, but try not to go too crazy.
When I thought I was dying, I found that I didn't really care about travel or bucket-list-y stuff as much as I cared about looking back at my life and trying to make sense of it all. I reached out to a lot of old friends and family I'd kind of lost touch with, and I tried to reestablish those connections or find closure. Don't force yourself to go climb a mountain, if you've never wanted to climb a mountain. Say nope to tropes, and live and die in a way that's true to you.
posted by Ursula Hitler at 3:04 PM on December 3, 2023 [8 favorites]
We've all known or heard about cancer patients who were told they had six months and then lived many years. It does happen. I say this partly to offer you some hope, but also to remind you that you need to try and plan for dying while also planning for not dying. You should do the things you've always wanted to do, carpe diem, etc., but don't make all of your decisions based on the assumption that you won't be here later to deal with the consequences. Don't blow all your money. Don't rashly confess secrets you might live to regret. Go crazy, certainly, but try not to go too crazy.
When I thought I was dying, I found that I didn't really care about travel or bucket-list-y stuff as much as I cared about looking back at my life and trying to make sense of it all. I reached out to a lot of old friends and family I'd kind of lost touch with, and I tried to reestablish those connections or find closure. Don't force yourself to go climb a mountain, if you've never wanted to climb a mountain. Say nope to tropes, and live and die in a way that's true to you.
posted by Ursula Hitler at 3:04 PM on December 3, 2023 [8 favorites]
Just wanted to say that I'm really sorry that you're going through this. I don't have any words of wisdom, but I just wanted to express my support.
posted by carnival_night_zone at 6:41 AM on December 4, 2023
posted by carnival_night_zone at 6:41 AM on December 4, 2023
I don't have any advice to add that hasn't been better expressed by others already. I do want to say that I am so sorry that you are going through this, and also that I greatly admire you. You have handled this horrible situation with such grace, open-heartedness, open-mindedness, introspection, and self-knowledge - which, for those of us who have known you for years here on Metafilter, is exactly the person you are in all other aspects of your life. No matter how this shakes out, know that you have the respect, admiration, and loving thoughts of so many of us here. Many hugs to you and fuck cancer.
posted by nayantara at 12:36 PM on December 4, 2023 [1 favorite]
posted by nayantara at 12:36 PM on December 4, 2023 [1 favorite]
« Older I want a CD player like it's 1999 | Dining table set for toddlers and seniors to share Newer »
You are not logged in, either login or create an account to post comments
posted by kate blank at 9:25 AM on December 1, 2023 [113 favorites]