possibly 3-5 years to live: How will I/would you spend it?
March 21, 2019 5:08 AM Subscribe
I'm currently waiting to find out if my cancer has returned in a metastatic (terminal) form. Help me prepare for the worst, as having a plan is the only thing that will help my anxiety right now. Not really looking to make a "bucket list" as much as to decide what my priorities are and see what others think, out of curiosity.
I was treated for an aggressive type of breast cancer 3 years ago at age 31, and warned that, although the treatment "worked" for the time being, I was at high risk (about a 60-70 percent chance) for a metastatic recurrence in my bones and vital organs, due to a number of genetic factors and tumor characteristics. Now I have symptoms of metastases, and am awaiting my test results (MRI/PT/CT). My onc thinks there is good reason to suspect progression to my bones, but in this world nothing is for sure until scans (and then biopsy) come back.
Here is what I know: If the cancer is back, the average amount of time left for me to live would be about 36 months depending on how I respond to treatments, according to the latest oncology research. Although I have read many stories about people surviving closer to 4-6 years due to newer medications, expecting I have much more time than that would be unrealistic save some sort of immediate research breakthrough. I'm an evidence-based thinker and not an especially hopeful or optimistic person - in other words, I'm not assuming I'll be an outlier and I don't believe in miracles.
My final six months (on IV chemo or a clinical trial) would likely be spent bedridden or at least too sick to travel/exert myself much, but the rest of the time my quality of life could be decent - most of the first and second line meds are tolerable based on what friends have shared with me.
I have saved enough money up to live frugally in my city of choice for about 2 years if I continue to work like 10 hours/week (I freelance) - would have to rely on a combination of crowdfunding, family support, and govt disability benefits for my final year, but I'm not too worried about that now.
I don't have and never wanted children. I'm close with my friends, parents, and sibling. I've never prioritized traveling - it wears me out. I love spending time in nature and with animals. Not into recreational drugs. Enjoy doing political activism related to illness/disability/healthcare. I have a long term supportive boyfriend who loves me, but if I'm honest, I actually really want a girlfriend (either instead of or in addition to my bf). I also have always wanted to write a memoir, but only if I could get it published - not as personal catharsis.
Now that the details are out of the way, I'd love to hear how you would spend your time - "your one wild and precious life" - in my situation. What would make you feel your life was meaningful (without kids)? Political advocacy, mentoring, and writing? Or would you emphasize feeling comfortable and happy instead of meaning (in this case I would just spend all day walking in the woods or working with rescued animals)? Trying to balance for a combination? I don't like the idea of a checklist of things I need to do, but I want a way to set up my life to be as fulfilling for me as possible so that at the very end I will feel like I used my time optimally.
I was treated for an aggressive type of breast cancer 3 years ago at age 31, and warned that, although the treatment "worked" for the time being, I was at high risk (about a 60-70 percent chance) for a metastatic recurrence in my bones and vital organs, due to a number of genetic factors and tumor characteristics. Now I have symptoms of metastases, and am awaiting my test results (MRI/PT/CT). My onc thinks there is good reason to suspect progression to my bones, but in this world nothing is for sure until scans (and then biopsy) come back.
Here is what I know: If the cancer is back, the average amount of time left for me to live would be about 36 months depending on how I respond to treatments, according to the latest oncology research. Although I have read many stories about people surviving closer to 4-6 years due to newer medications, expecting I have much more time than that would be unrealistic save some sort of immediate research breakthrough. I'm an evidence-based thinker and not an especially hopeful or optimistic person - in other words, I'm not assuming I'll be an outlier and I don't believe in miracles.
My final six months (on IV chemo or a clinical trial) would likely be spent bedridden or at least too sick to travel/exert myself much, but the rest of the time my quality of life could be decent - most of the first and second line meds are tolerable based on what friends have shared with me.
I have saved enough money up to live frugally in my city of choice for about 2 years if I continue to work like 10 hours/week (I freelance) - would have to rely on a combination of crowdfunding, family support, and govt disability benefits for my final year, but I'm not too worried about that now.
I don't have and never wanted children. I'm close with my friends, parents, and sibling. I've never prioritized traveling - it wears me out. I love spending time in nature and with animals. Not into recreational drugs. Enjoy doing political activism related to illness/disability/healthcare. I have a long term supportive boyfriend who loves me, but if I'm honest, I actually really want a girlfriend (either instead of or in addition to my bf). I also have always wanted to write a memoir, but only if I could get it published - not as personal catharsis.
Now that the details are out of the way, I'd love to hear how you would spend your time - "your one wild and precious life" - in my situation. What would make you feel your life was meaningful (without kids)? Political advocacy, mentoring, and writing? Or would you emphasize feeling comfortable and happy instead of meaning (in this case I would just spend all day walking in the woods or working with rescued animals)? Trying to balance for a combination? I don't like the idea of a checklist of things I need to do, but I want a way to set up my life to be as fulfilling for me as possible so that at the very end I will feel like I used my time optimally.
First off, I am so terribly sorry that you find yourself even contemplating this.
I see you quote Mary Oliver. She helped me through some tough times, not so much because of her poems (though they are wonderful) but because she taught me to go out and observe the world and acknowledge how nature affected me, even in small ways. Feeling like I am a part of the world, by being in nature and having BIG feelings about nature, helped me accept that I am a little interconnected speck in the universe; my life matters, not just doing things, but being.
I would spend as much time outside as I could and I would write. Like you, I would try to get published, but what the goal would really be is to leave a small mark in human consciousness that said I lived and I saw and I thought.
posted by lydhre at 5:19 AM on March 21, 2019 [10 favorites]
I see you quote Mary Oliver. She helped me through some tough times, not so much because of her poems (though they are wonderful) but because she taught me to go out and observe the world and acknowledge how nature affected me, even in small ways. Feeling like I am a part of the world, by being in nature and having BIG feelings about nature, helped me accept that I am a little interconnected speck in the universe; my life matters, not just doing things, but being.
I would spend as much time outside as I could and I would write. Like you, I would try to get published, but what the goal would really be is to leave a small mark in human consciousness that said I lived and I saw and I thought.
posted by lydhre at 5:19 AM on March 21, 2019 [10 favorites]
I am very sorry this is the news you are waiting to get.
Personally, I think most of us don't have meaningful lives, and it isn't realistic to expect that on a planet of billions, this is a thing each person can or should aspire to. I care only that my life is meaningful to me, filled with people and experiences and learning with depth and enjoyment.
If you want to go live in a cabin in the woods, do that. Be comfortable and happy.
I'm going to be honest: it's a rare person who would choose to form a new relationship with someone who is terminal, who isn't also a massive drama clusterfuck.
posted by DarlingBri at 5:21 AM on March 21, 2019 [11 favorites]
Personally, I think most of us don't have meaningful lives, and it isn't realistic to expect that on a planet of billions, this is a thing each person can or should aspire to. I care only that my life is meaningful to me, filled with people and experiences and learning with depth and enjoyment.
If you want to go live in a cabin in the woods, do that. Be comfortable and happy.
I'm going to be honest: it's a rare person who would choose to form a new relationship with someone who is terminal, who isn't also a massive drama clusterfuck.
posted by DarlingBri at 5:21 AM on March 21, 2019 [11 favorites]
Response by poster: DarlingBri - Thank you. To your last comment - this is hard for me because I'll be so sad and regretful, I think, if I die before I get to have a girlfriend. I've wanted one, and known my sexuality for a while now, but for all kinds of reasons (certain relatives, geographical limitations, social norms, etc) have not been able to express this part of myself yet. Do you think there are any exceptions to your statement? Should/can I tell people I have cancer but not how much time I have left?
posted by CancerSucks at 5:30 AM on March 21, 2019 [1 favorite]
posted by CancerSucks at 5:30 AM on March 21, 2019 [1 favorite]
I'm so sorry. Having watched my dad quickly get sick and pass away young, I would answer your big question here by saying you should emphasize your own happiness and joy, and not worry too much about "meaning". I'd try all sorts of new things and really focus in on the things that bring you pleasure.
posted by Rock Steady at 5:37 AM on March 21, 2019 [5 favorites]
posted by Rock Steady at 5:37 AM on March 21, 2019 [5 favorites]
I'm so sorry you're going through this. I hope you get an answer swiftly and can move ahead with the right thing for you once you know.
On the priorities front, for me personally what is most meaningful is making life easier or better for the people I love, or for people as a whole. I think I would probably spend my time on a mix of personal-comfort-and-happiness stuff, plus finding some way to be of service to my loved ones in ways that are meaningful to me and to them, and maybe ideally ways that would outlast me. Maybe I would write letters, lots of letters, telling people what they have meant to me. Maybe I would write that memoir if I felt that doing so would be useful or meaningful in some way. Maybe I would help my loved ones with their personal projects. I think my focus would be local and personal; but your calculus may be different.
I would definitely work in my garden, planting and tending both things that are beautiful now, and things that would outlive me. I would like for my partner, or hell, even other people who live in my house one day, to find beauty and solace in something I helped bring into the world, even after I'm gone.
posted by Stacey at 5:41 AM on March 21, 2019 [4 favorites]
On the priorities front, for me personally what is most meaningful is making life easier or better for the people I love, or for people as a whole. I think I would probably spend my time on a mix of personal-comfort-and-happiness stuff, plus finding some way to be of service to my loved ones in ways that are meaningful to me and to them, and maybe ideally ways that would outlast me. Maybe I would write letters, lots of letters, telling people what they have meant to me. Maybe I would write that memoir if I felt that doing so would be useful or meaningful in some way. Maybe I would help my loved ones with their personal projects. I think my focus would be local and personal; but your calculus may be different.
I would definitely work in my garden, planting and tending both things that are beautiful now, and things that would outlive me. I would like for my partner, or hell, even other people who live in my house one day, to find beauty and solace in something I helped bring into the world, even after I'm gone.
posted by Stacey at 5:41 AM on March 21, 2019 [4 favorites]
After having so much cancer in my family that resulted in timelines like one you may be facing (and I'm so sorry you have to face even the possibility of such), making sure that, right now, you set your wishes and needs in terms of end-of-life care and quality of life are super-important. The rest is more a personal matter, but if you want to not be blindsided (and the people who may be asked what your wishes are) by sudden changes in your health status or ability to articulate instructions, make sure you've written out exact instructions about how much invasive medical intervention you want, at which times. Do you want to spend the remainder of the last months at home, where critical care could be delayed but you'd be in familiar surroundings, or at a facility like a hospital or hospice, where you'd be watched over all the time, but not in your home?
It seems like a horrifying thing to think about, but knowing all this in advance and appointing the people you love and trust (sometimes not the same people) to carry out your wishes and making that official in as legal a manner as you wish can then unburden you to pursue what you'd like to in a limited amount of time.
posted by xingcat at 5:43 AM on March 21, 2019 [11 favorites]
It seems like a horrifying thing to think about, but knowing all this in advance and appointing the people you love and trust (sometimes not the same people) to carry out your wishes and making that official in as legal a manner as you wish can then unburden you to pursue what you'd like to in a limited amount of time.
posted by xingcat at 5:43 AM on March 21, 2019 [11 favorites]
I'm so sorry you're going through this. I feel like no one can really answer this question for you, it seems so highly personal. Just wanted to chime in to strongly disagree with the commenter above who said that any woman who was drawn to you would be a drama clusterfuck. I'm assuming you're bisexual? There are all sorts in the queer community, and generally speaking, queer people tend to have been through stuff before and tend to be a little braver and a little less threatened by someone going through a horrible time than straight people would be.
I also feel like the history of AIDS in the community could be a good thing to read about right now. People went on living, loving each other, being themselves even in the hospital bed.
posted by coffeeand at 5:47 AM on March 21, 2019 [18 favorites]
I also feel like the history of AIDS in the community could be a good thing to read about right now. People went on living, loving each other, being themselves even in the hospital bed.
posted by coffeeand at 5:47 AM on March 21, 2019 [18 favorites]
For an alternate perspective - there are plenty of women out there (myself included) who want to date but are not looking for a permanent partner. On dating apps, that's called "short term dating". Try it out, just keep your filters for drama firmly in place and be up for making new friends.
For the rest of it, do the things you love as much as you can. For me this would be making art, reading, spending time with my cats, and seeing my friends. If you like trying new foods, do that. Museums? Now is a great time to go to all the weird museums in your area. Activism? Always correct. It's okay if you don't suddenly change the world, most of us aren't going to do that either. Go forth and enjoy things.
posted by bile and syntax at 5:53 AM on March 21, 2019 [18 favorites]
For the rest of it, do the things you love as much as you can. For me this would be making art, reading, spending time with my cats, and seeing my friends. If you like trying new foods, do that. Museums? Now is a great time to go to all the weird museums in your area. Activism? Always correct. It's okay if you don't suddenly change the world, most of us aren't going to do that either. Go forth and enjoy things.
posted by bile and syntax at 5:53 AM on March 21, 2019 [18 favorites]
Meaning is elusive and subjective, not only from one person to the next, but even for the same person, from day to day. What you are facing is terrifying, and yet as I have contemplated my mother's recent death, we would all be better off to live our lives with a greater respect for our mortality, and live according to a more urgent sense of the gift of time.
Mindfully finding a way to bring joy to each day, in simple ways, seems like a good goal. But also, like everyone, that you should allow yourself to run the full range of human experience, without the pressure that every single thing you do needs to be important and 'meaningful'. Perhaps this means challenging yourself to seek out new experiences, as much as retreating to the comfortable and familiar ones. And I don't see why your diagnosis would preclude you from meeting new people (women) and dating. It would be silly to assume that everyone is only after long term commitments.
If writing is enjoyable to you, then do that. I wish my mother had captured a little more of herself and her life in words so that I had some part of her thoughts to hang onto. But if you are only writing because it feels like a "legacy" activity, I doubt that will be very rewarding. Enjoying nature and animals is just as profound, and just as valid.
posted by amusebuche at 6:13 AM on March 21, 2019 [1 favorite]
Mindfully finding a way to bring joy to each day, in simple ways, seems like a good goal. But also, like everyone, that you should allow yourself to run the full range of human experience, without the pressure that every single thing you do needs to be important and 'meaningful'. Perhaps this means challenging yourself to seek out new experiences, as much as retreating to the comfortable and familiar ones. And I don't see why your diagnosis would preclude you from meeting new people (women) and dating. It would be silly to assume that everyone is only after long term commitments.
If writing is enjoyable to you, then do that. I wish my mother had captured a little more of herself and her life in words so that I had some part of her thoughts to hang onto. But if you are only writing because it feels like a "legacy" activity, I doubt that will be very rewarding. Enjoying nature and animals is just as profound, and just as valid.
posted by amusebuche at 6:13 AM on March 21, 2019 [1 favorite]
I would look for a queer-focused hiking/nature-loving/animal-rescuing group and start there. Whether you enter into a relationship or not, it sounds to me like that's the part of you that hasn't fully gotten a shot at getting into the world.
I'm really sorry you're dealing with this.
posted by warriorqueen at 6:24 AM on March 21, 2019 [6 favorites]
I'm really sorry you're dealing with this.
posted by warriorqueen at 6:24 AM on March 21, 2019 [6 favorites]
Do you think there are any exceptions to your statement? Should/can I tell people I have cancer but not how much time I have left?
I think this question is...really complicated. "Girlfriend" implies a relationship of some duration. I might navigate this by ticking the box for "short term dating only" and while that doesn't sound like what you ideally want, it might be a workable compromise. Once feelings are involved though, or if a relationship ceases to be transitory, you need to disclose. It isn't fair to the other person to leave room for them to fall for you without being fully informed.
posted by DarlingBri at 7:08 AM on March 21, 2019
I think this question is...really complicated. "Girlfriend" implies a relationship of some duration. I might navigate this by ticking the box for "short term dating only" and while that doesn't sound like what you ideally want, it might be a workable compromise. Once feelings are involved though, or if a relationship ceases to be transitory, you need to disclose. It isn't fair to the other person to leave room for them to fall for you without being fully informed.
posted by DarlingBri at 7:08 AM on March 21, 2019
If you are the kind of person that ruminates on things, not at least trying for a gf would make you last months full of anguish in my opinion. How will you feel about dumping your bf especially if he has been supportive and helpful? As for how to spend the last years, I would be Id driven. Do what pleases you.
posted by AugustWest at 7:25 AM on March 21, 2019
posted by AugustWest at 7:25 AM on March 21, 2019
If you want a girlfriend in addition to a boyfriend or in place of, maybe consider joining a sex positive group if there's one nearby and being very clear about your situation? In my, admittedly limited, experience you might find someone who's more open to the experience and idea of loving a person that they know is not going to be with them for a long period.
A friend of mine passed in early 2017 after about two years of dealing with cancer, and it's given me a lot of time to think about how I would deal with a similar situation as well as how I interact with people who are facing that situation. Were I not in a relationship, I'd be open to dating someone knowing that they were dealing with a terminal illness (assuming I'd be open to dating them in general, of course).
As someone else mentioned, I would not do anything grand or feel like I needed to do anything major to give my life meaning. I'd spend my time doing things I enjoy - art, hugging my cats, hugging other people's cats, spending time with my partner and her kids, my friends, and generally doing the things I enjoy and doing fewer things I don't enjoy. Well. Maybe I'd go see the redwoods in California, but I'm with you about travel - it tires me out, I don't think I need to do more of it in general and I certainly wouldn't seek out a lot of it if I knew I only had a few years to go. I'd seek quiet and comfort, and love and friendship.
After my friend ceased chemo and other treatments she told me that she was "living the life of a cat" - just doing what she wanted, resting when she was tired, eating whatever she felt like, seeing people when/if she felt like seeing people, and I didn't get the sense she regretted hot having or desired more "big" experiences or accomplishments.
I'm sorry you're dealing with this, and I hope you get good news. If not, I hope you enjoy as much time as you can. Hugs from this internet stranger.
posted by jzb at 7:35 AM on March 21, 2019 [5 favorites]
A friend of mine passed in early 2017 after about two years of dealing with cancer, and it's given me a lot of time to think about how I would deal with a similar situation as well as how I interact with people who are facing that situation. Were I not in a relationship, I'd be open to dating someone knowing that they were dealing with a terminal illness (assuming I'd be open to dating them in general, of course).
As someone else mentioned, I would not do anything grand or feel like I needed to do anything major to give my life meaning. I'd spend my time doing things I enjoy - art, hugging my cats, hugging other people's cats, spending time with my partner and her kids, my friends, and generally doing the things I enjoy and doing fewer things I don't enjoy. Well. Maybe I'd go see the redwoods in California, but I'm with you about travel - it tires me out, I don't think I need to do more of it in general and I certainly wouldn't seek out a lot of it if I knew I only had a few years to go. I'd seek quiet and comfort, and love and friendship.
After my friend ceased chemo and other treatments she told me that she was "living the life of a cat" - just doing what she wanted, resting when she was tired, eating whatever she felt like, seeing people when/if she felt like seeing people, and I didn't get the sense she regretted hot having or desired more "big" experiences or accomplishments.
I'm sorry you're dealing with this, and I hope you get good news. If not, I hope you enjoy as much time as you can. Hugs from this internet stranger.
posted by jzb at 7:35 AM on March 21, 2019 [5 favorites]
so i'm kind of in your shoes, tho not with cancer. but i am facing a life dramatically cut short, and maybe only 3 years or so left.
what i am trying to do is do more things while i can. i am going on a trip this weekend with my boyfriend. i have marked several local events on facebook as "going." i am trying to not worry about the $40 cost of "paint your pet" or whatever, because i know ultimately it will be a fun thing for me to do and i probably won't need a retirement account.
before my diagnosis i was a lot more "meh" about doing things because i don't really like people and i have a lot of anxiety and shame, but i need to get out and do things while i can. if, for you, that is being out in the woods or working with animals, you should absolutely do that.
as for your desire for a girlfriend...do you want to just have some sex with a woman, or do you want a long term relationship? how would your boyfriend feel about either or both scenarios? are you okay with the possibility of losing him, a source of support, over wanting a girlfriend?
posted by misanthropicsarah at 7:45 AM on March 21, 2019 [6 favorites]
what i am trying to do is do more things while i can. i am going on a trip this weekend with my boyfriend. i have marked several local events on facebook as "going." i am trying to not worry about the $40 cost of "paint your pet" or whatever, because i know ultimately it will be a fun thing for me to do and i probably won't need a retirement account.
before my diagnosis i was a lot more "meh" about doing things because i don't really like people and i have a lot of anxiety and shame, but i need to get out and do things while i can. if, for you, that is being out in the woods or working with animals, you should absolutely do that.
as for your desire for a girlfriend...do you want to just have some sex with a woman, or do you want a long term relationship? how would your boyfriend feel about either or both scenarios? are you okay with the possibility of losing him, a source of support, over wanting a girlfriend?
posted by misanthropicsarah at 7:45 AM on March 21, 2019 [6 favorites]
If you're only interested in a memoir if you can get it published as a book, that probably isn't something to work on, unless you'd self-publish, since getting something published is very hard and takes a lot of energy. I know that one cancer patient who died recently wrote a blog, which did lead to a book deal - I believe she lived to see the book published. And blogging is a way of publishing, so if that's something you want, you could do that. (I'd read your blog.)
You refer to your "city of choice." Is there something you have in mind for that? If there's someplace you really want to live, this would be the time to do it. But it might be good to be near family and friends if you expect to rely on them. And wherever you move to should have a good hospice system. Over and over, people say that hospice is a godsend. I was very impressed with them when my uncle died.
I'm a cancer patient as well, with a cancer considered incurable, though it's still likely I'll live a long time. My focus right now is on working toward moving closer to my kids, since spending time with them is my priority. I know that isn't an issue for you, but I bring it up because choosing where I want to live seems really crucial in determining how to plan for whatever time I have left.
(I know you don't believe in miracles and want to plan for the worst, but my cancer board has a number of people who spent most of their money, having been told they were going to die soon, and then ended up living much longer because they were able to take advantage of new treatments.)
posted by FencingGal at 7:51 AM on March 21, 2019 [5 favorites]
You refer to your "city of choice." Is there something you have in mind for that? If there's someplace you really want to live, this would be the time to do it. But it might be good to be near family and friends if you expect to rely on them. And wherever you move to should have a good hospice system. Over and over, people say that hospice is a godsend. I was very impressed with them when my uncle died.
I'm a cancer patient as well, with a cancer considered incurable, though it's still likely I'll live a long time. My focus right now is on working toward moving closer to my kids, since spending time with them is my priority. I know that isn't an issue for you, but I bring it up because choosing where I want to live seems really crucial in determining how to plan for whatever time I have left.
(I know you don't believe in miracles and want to plan for the worst, but my cancer board has a number of people who spent most of their money, having been told they were going to die soon, and then ended up living much longer because they were able to take advantage of new treatments.)
posted by FencingGal at 7:51 AM on March 21, 2019 [5 favorites]
FYI, I only brought up the people who ended up living longer because they now have financial problems, not to try to tell you that you should be hopeful because you too can experience an unexpected recovery.
posted by FencingGal at 8:02 AM on March 21, 2019
posted by FencingGal at 8:02 AM on March 21, 2019
The model I'd look to is Derek Jarman's later life. He was a British Filmmaker who dies of Aids Related complications in the early 90's. He painted, wrote, visited and kept an amazing set of diaries, but possibly his most interesting aspect of his legacy was his garden.
posted by Middlemarch at 8:08 AM on March 21, 2019 [2 favorites]
posted by Middlemarch at 8:08 AM on March 21, 2019 [2 favorites]
FWIW - You said you aren't into recreational drugs, but there have been studies by reputable hospitals on how these *plant medicines* can help those facing death integrate that (google 'mushrooms terminally ill' and you'll find several summaries). It could be very helpful in this time of planning as well to really get clear on your priorities in your time here on earth.
As for dating in your gender, I say put it out there on the internet. Internet dating is terrible but also great if you are specific and willing to be patient in finding what you want. Once you are clear on the many questions posed by others, put it all in your profile (no matter how complicated) and see who's interested. You can only be responsible for you, don't edit for the sake of others. As someone who is working on being very clear about what they want/boundaries/etc, it feels really nice to know what i want, put it out there and then see who's interested. If that means i exclude lots of people, so be it, they aren't for me anyways.
posted by vividvoltage at 8:20 AM on March 21, 2019 [1 favorite]
As for dating in your gender, I say put it out there on the internet. Internet dating is terrible but also great if you are specific and willing to be patient in finding what you want. Once you are clear on the many questions posed by others, put it all in your profile (no matter how complicated) and see who's interested. You can only be responsible for you, don't edit for the sake of others. As someone who is working on being very clear about what they want/boundaries/etc, it feels really nice to know what i want, put it out there and then see who's interested. If that means i exclude lots of people, so be it, they aren't for me anyways.
posted by vividvoltage at 8:20 AM on March 21, 2019 [1 favorite]
Wow, I'm so sorry this is happening. It sounds... overwhelming.
We should all be asking ourselves the questions you're asking yourself. None of us know how much time we have, and we should all live the lives that will give us meaning now.
On a practical side, I think it's important to plan who will be caring for you and where when you're sick. Reality is this will have a huge impact on your quality of life, and it seems important to line this up.
You want to write a memoir. Why not start that today? Just write an hour a day? Maybe start with some personal essays. Or combine your passion for activism with writing and write about disability and healthcare issues you care about?
I don't know how to answer the rest of your question except avoid wasting time on doing things to be polite, projects you don't care about. Spend time in nature as often as you can. Surround yourself with your loved ones. And lean on them. They know you - maybe they are better guides here than us internet people.
posted by latkes at 9:38 AM on March 21, 2019 [1 favorite]
We should all be asking ourselves the questions you're asking yourself. None of us know how much time we have, and we should all live the lives that will give us meaning now.
On a practical side, I think it's important to plan who will be caring for you and where when you're sick. Reality is this will have a huge impact on your quality of life, and it seems important to line this up.
You want to write a memoir. Why not start that today? Just write an hour a day? Maybe start with some personal essays. Or combine your passion for activism with writing and write about disability and healthcare issues you care about?
I don't know how to answer the rest of your question except avoid wasting time on doing things to be polite, projects you don't care about. Spend time in nature as often as you can. Surround yourself with your loved ones. And lean on them. They know you - maybe they are better guides here than us internet people.
posted by latkes at 9:38 AM on March 21, 2019 [1 favorite]
I'm so sorry you're having to deal with this.
I would get my personal stuff in order, to the extent possible. Once that is out of the way, I would spend my time with dogs, cats, and traveling to places with the clearest night skies. I've always been fascinated by astronomy and I would no longer put off learning more. And I would eat comfort food.
You seem to have an admirably clear idea of what makes you happy. Go do those things, with no reservations, for as long as you can.
posted by Nieshka at 10:21 AM on March 21, 2019 [2 favorites]
I would get my personal stuff in order, to the extent possible. Once that is out of the way, I would spend my time with dogs, cats, and traveling to places with the clearest night skies. I've always been fascinated by astronomy and I would no longer put off learning more. And I would eat comfort food.
You seem to have an admirably clear idea of what makes you happy. Go do those things, with no reservations, for as long as you can.
posted by Nieshka at 10:21 AM on March 21, 2019 [2 favorites]
I'm so sorry this is the kind of calculus you're having to do now.
I wanted to address the girlfriend part. One, I think that there are absolutely exceptions to what DarlingBri said about dramatic folks being the only ones who would date you. And I also would strongly encourage you to disclose the time you have left to live to any potential girlfriends--they should be able to choose whether that's a situation they'd like to enter into, if you have that information. Plus, if you actually started dating them, it would probably come out pretty quickly, don't you think?
I can only speak for myself, but as a polyamorous queer woman in a long-term, settled relationship with a man, who would really like to be dating women who aren't looking to form a household or an extremely committed relationship, this is absolutely a situation I would consider. I imagine it would be quite difficult emotionally, but also with potential for a worthwhile experience, so seeing your honest profile wouldn't make me immediately turn away if I found you attractive. I really don't believe I'm the only person who feels like this.
Have you spoken about it at all with your boyfriend? If you're wanting to stay with him, I think that's a good first step. Even if he wouldn't typically be open to this idea, perhaps your shortened timeline might make him feel more open to it. You know him best. And if you don't want to stay with him, I think breaking up with him sooner rather than later is the kindest thing to do, for both of you.
As for the other parts of your life, I think I'd spend as much time as I could reading, spending time with rescue animals, and being out in the woods. I think rescue animals can use all the love and attention they can get, and it still feels like giving back, plus rescue orgs can always use the help. Maybe you could combine those things--take rescue dogs for walks in the woods, if you're drawn to dogs. Would writing a memoir with the intent to get it published, even if it didn't get published, still feel worthwhile to you?
Best wishes to you. Happy to answer polyamory/queer questions if you have them and want to PM me.
posted by Illuminated Clocks at 11:12 AM on March 21, 2019 [1 favorite]
I wanted to address the girlfriend part. One, I think that there are absolutely exceptions to what DarlingBri said about dramatic folks being the only ones who would date you. And I also would strongly encourage you to disclose the time you have left to live to any potential girlfriends--they should be able to choose whether that's a situation they'd like to enter into, if you have that information. Plus, if you actually started dating them, it would probably come out pretty quickly, don't you think?
I can only speak for myself, but as a polyamorous queer woman in a long-term, settled relationship with a man, who would really like to be dating women who aren't looking to form a household or an extremely committed relationship, this is absolutely a situation I would consider. I imagine it would be quite difficult emotionally, but also with potential for a worthwhile experience, so seeing your honest profile wouldn't make me immediately turn away if I found you attractive. I really don't believe I'm the only person who feels like this.
Have you spoken about it at all with your boyfriend? If you're wanting to stay with him, I think that's a good first step. Even if he wouldn't typically be open to this idea, perhaps your shortened timeline might make him feel more open to it. You know him best. And if you don't want to stay with him, I think breaking up with him sooner rather than later is the kindest thing to do, for both of you.
As for the other parts of your life, I think I'd spend as much time as I could reading, spending time with rescue animals, and being out in the woods. I think rescue animals can use all the love and attention they can get, and it still feels like giving back, plus rescue orgs can always use the help. Maybe you could combine those things--take rescue dogs for walks in the woods, if you're drawn to dogs. Would writing a memoir with the intent to get it published, even if it didn't get published, still feel worthwhile to you?
Best wishes to you. Happy to answer polyamory/queer questions if you have them and want to PM me.
posted by Illuminated Clocks at 11:12 AM on March 21, 2019 [1 favorite]
Okay, a couple of notes on a more-awake read-through.
First, please ping me for information about disability benefits, this was literally my job for a long time. The short version is, you should file as soon as you're making under the income limit, and talk to your doctor about when to do this.
Second, if you have a boyfriend, you're dealing with different things about dating women. Please be up front about the boyfriend situation, and do not treat anyone in ways you would not want to be treated. Honestly for me as a single lesbian, the boyfriend is more off-putting than the diagnosis because I have been treated very badly by women with boyfriends in the past, and I am not unique in this regard at all. If you're going to keep the boyfriend, you probably want to look for ladies who are already part of your local poly scene.
Edited to add: I am a lawyer, I am not your lawyer and cannot give you legal advice.
posted by bile and syntax at 12:14 PM on March 21, 2019 [1 favorite]
First, please ping me for information about disability benefits, this was literally my job for a long time. The short version is, you should file as soon as you're making under the income limit, and talk to your doctor about when to do this.
Second, if you have a boyfriend, you're dealing with different things about dating women. Please be up front about the boyfriend situation, and do not treat anyone in ways you would not want to be treated. Honestly for me as a single lesbian, the boyfriend is more off-putting than the diagnosis because I have been treated very badly by women with boyfriends in the past, and I am not unique in this regard at all. If you're going to keep the boyfriend, you probably want to look for ladies who are already part of your local poly scene.
Edited to add: I am a lawyer, I am not your lawyer and cannot give you legal advice.
posted by bile and syntax at 12:14 PM on March 21, 2019 [1 favorite]
Go ahead and do the memoir even if not published because your nieces and nephews will enjoy hearing the true story of that aunt's "wild and precious life". And you still have time, maybe more than you think.... go and pet the pussies and walk the dogs through the woods. Activate and march and fight and be yourself. Rid yourself of remorse and regret and when eventually you die, die with your boots on. Today is like every other day, it's the first day of the rest of your life and you could be hit by a truck tomorrow.
So yeah, I think you answered your own question and you sound so much like me except that I have crawled into bed with another boy and write that tell all memoir even if not published if not for you for your nieces and nephews and future generations so they have *really good stories* about wild aunt with precious life.
Life starts now.
posted by zengargoyle at 8:15 PM on March 21, 2019
So yeah, I think you answered your own question and you sound so much like me except that I have crawled into bed with another boy and write that tell all memoir even if not published if not for you for your nieces and nephews and future generations so they have *really good stories* about wild aunt with precious life.
Life starts now.
posted by zengargoyle at 8:15 PM on March 21, 2019
I have not faced your situation, but a combination of genetics and poor self-care have left me in a position where I could plausibly die tomorrow or thirty years from now.
As such I’ve settled into a life with 10 hours of community service per week, and I spend the rest of the time farting around. I like to learn so I’m spending a lot of time doing that, but it’s just play. If I watch my pennies I can go on indefinitely like this. I might get bored eventually but it won’t be in the 3-5 year timeframe.
posted by Tell Me No Lies at 9:50 PM on March 21, 2019 [1 favorite]
As such I’ve settled into a life with 10 hours of community service per week, and I spend the rest of the time farting around. I like to learn so I’m spending a lot of time doing that, but it’s just play. If I watch my pennies I can go on indefinitely like this. I might get bored eventually but it won’t be in the 3-5 year timeframe.
posted by Tell Me No Lies at 9:50 PM on March 21, 2019 [1 favorite]
My aunt died recently (lung cancer, chemotherapy, remission, then a sudden heart attack and out the door).
We had several good conversations, and one thing that stays with me is that she was up for a fight, but what would happen would happen.
But she was adamant about one thing -- she donated her body to science.
She got a real kick out of the idea of others benefiting from her donated tissues, and how doctors would learn more by studying her. And then her ashes would be sent back and it would not cost my uncle anything.
And that's how it went.
Her ashes will be scattered near her oldest son's grave. My uncle has a beautiful plaque with a recent picture of her on it. He can take it with him if he moves to another home.
My aunt was an awesome lady. She was a total take-no-shit person, hated pretence, and very matter-of-fact.
This gave her a strength, a voice in her decisions.
And I believe she was tickled about all the medical personnel trying to figure things out with her body in the room.
I wish for you and others here a soft and serene passing.
posted by TrishaU at 10:28 PM on March 21, 2019
We had several good conversations, and one thing that stays with me is that she was up for a fight, but what would happen would happen.
But she was adamant about one thing -- she donated her body to science.
She got a real kick out of the idea of others benefiting from her donated tissues, and how doctors would learn more by studying her. And then her ashes would be sent back and it would not cost my uncle anything.
And that's how it went.
Her ashes will be scattered near her oldest son's grave. My uncle has a beautiful plaque with a recent picture of her on it. He can take it with him if he moves to another home.
My aunt was an awesome lady. She was a total take-no-shit person, hated pretence, and very matter-of-fact.
This gave her a strength, a voice in her decisions.
And I believe she was tickled about all the medical personnel trying to figure things out with her body in the room.
I wish for you and others here a soft and serene passing.
posted by TrishaU at 10:28 PM on March 21, 2019
I'd love to hear how you would spend your time - "your one wild and precious life" - in my situation.
I would reconnect with people I've lost touch with to make amends and let them know the positive impact they had on my life. I would go to a church and see a priest for confession to ask for forgiveness and make my peace with God. I would do the things I've always wanted to experience but kept putting off like going on a food tour of Japan with my husband, flying to Arizona to watch a Phoenix Suns game, etc. I would spend my days drinking coffee in my dad's backyard while basking in absolute gratitude for everything I've been blessed with, hugging our dogs, and cooking a feast for my family every night for as long as I can.
posted by tackypink at 11:00 AM on March 22, 2019 [1 favorite]
I would reconnect with people I've lost touch with to make amends and let them know the positive impact they had on my life. I would go to a church and see a priest for confession to ask for forgiveness and make my peace with God. I would do the things I've always wanted to experience but kept putting off like going on a food tour of Japan with my husband, flying to Arizona to watch a Phoenix Suns game, etc. I would spend my days drinking coffee in my dad's backyard while basking in absolute gratitude for everything I've been blessed with, hugging our dogs, and cooking a feast for my family every night for as long as I can.
posted by tackypink at 11:00 AM on March 22, 2019 [1 favorite]
As several others have commented, first I'd get my legal and financial matters in order: a will, an advanced care directive, etc. I'd make sure to have details of financial accounts recorded somewhere for the will's executor, like in a 3-ring binder or similar. (This would also be a handy place to keep copies of the will and advanced care directive and healthcare power of attorney, if you have one.)
Then-- I'd get rid of everything in my house that I didn't want to use or look at or wear or read again. I'd ask for help from friends or family members. There's probably somebody who enjoys clean-outs but wouldn't be too pushy. If there wasn't anybody like that, I'd hire somebody to help. Afterwards I'd pay for a one-time deep cleaning and enjoy my newly snazzy surroundings.
Then-- I'd arrange to spend as much time outdoors as possible, sometimes with friends, sometimes alone. I know you said you don't like to travel, but maybe it would be fun to do local hikes that you don't have time for now. Or ask a good friend to take you somewhere in maybe a 2 or 3 hour drive-- they handle logistics (driving, getting food together, etc.) and you pay for gas and a cabin?
Memoir writing: For a long writing project like that, consider taking a class. It really helps to have assignments and supportive feedback. If a class is not your jam, consider signing up for Storyworth. (I have no personal experience with Storyworth but Jenny Lawson got it for her dad and had good things to say about it.) Even if it's not commercially published, you can have a book put together via storyworth, or self-publishing, if that's what you are looking for.
Relationships: If I were you, I'd have a long talk with my bf about wanting to explore a romantic/sexual connection with a woman. Then I'd set up an online dating profile and explore some dates with women. I don't think you need to share the details of your health situation right away because you'll probably have a bunch of first dates that don't go anywhere. But if you are getting past the first few dates with someone, then you'll need to share more.
Regarding activism and "making a difference," you are making a difference every day that you interact with people and animals and respond to others with kindness and gentle curiosity. If you want to do more along those lines, I think you'll know. But I would try to leave guilt and obligation out of it.
Lastly, you might consider taking up a meditation practice in the spirit of getting to know yourself better, such as mindfulness meditation. If that appeals to you, you can look for a local class by searching for mindfulness-based stress reduction + your area.
Finally if you do start a blog, consider posting it on Mefi Projects, because I would love to know how things are going for you.
posted by tuesdayschild at 2:08 PM on March 22, 2019 [3 favorites]
Then-- I'd get rid of everything in my house that I didn't want to use or look at or wear or read again. I'd ask for help from friends or family members. There's probably somebody who enjoys clean-outs but wouldn't be too pushy. If there wasn't anybody like that, I'd hire somebody to help. Afterwards I'd pay for a one-time deep cleaning and enjoy my newly snazzy surroundings.
Then-- I'd arrange to spend as much time outdoors as possible, sometimes with friends, sometimes alone. I know you said you don't like to travel, but maybe it would be fun to do local hikes that you don't have time for now. Or ask a good friend to take you somewhere in maybe a 2 or 3 hour drive-- they handle logistics (driving, getting food together, etc.) and you pay for gas and a cabin?
Memoir writing: For a long writing project like that, consider taking a class. It really helps to have assignments and supportive feedback. If a class is not your jam, consider signing up for Storyworth. (I have no personal experience with Storyworth but Jenny Lawson got it for her dad and had good things to say about it.) Even if it's not commercially published, you can have a book put together via storyworth, or self-publishing, if that's what you are looking for.
Relationships: If I were you, I'd have a long talk with my bf about wanting to explore a romantic/sexual connection with a woman. Then I'd set up an online dating profile and explore some dates with women. I don't think you need to share the details of your health situation right away because you'll probably have a bunch of first dates that don't go anywhere. But if you are getting past the first few dates with someone, then you'll need to share more.
Regarding activism and "making a difference," you are making a difference every day that you interact with people and animals and respond to others with kindness and gentle curiosity. If you want to do more along those lines, I think you'll know. But I would try to leave guilt and obligation out of it.
Lastly, you might consider taking up a meditation practice in the spirit of getting to know yourself better, such as mindfulness meditation. If that appeals to you, you can look for a local class by searching for mindfulness-based stress reduction + your area.
Finally if you do start a blog, consider posting it on Mefi Projects, because I would love to know how things are going for you.
posted by tuesdayschild at 2:08 PM on March 22, 2019 [3 favorites]
For what it's worth, on the relationship question: I find relationships with lovers to be valuable no matter the time limit. If I were available, I would be available.
posted by dwbrant at 1:28 PM on March 28, 2019
posted by dwbrant at 1:28 PM on March 28, 2019
This thread is closed to new comments.
posted by thelonius at 5:14 AM on March 21, 2019 [7 favorites]