Wife has a poor prognosis cancer – How do I stay engaged?
January 31, 2013 9:55 AM   Subscribe

Wife has a poor prognosis cancer – How do I stay engaged?

My wife has a cancer/stage that has less than 50% 2-year and less than 20% 5-year survivorship based on the state-of-the art treatment she’s scheduled to get at a top notch facility. Chemo/Radiation and a difficult surgery in a distant city are the immediate plan.

I’ve got lots of local family support, childcare help, and the job/insurance situation is good.

My usual coping strategy of taking a realistic assessment of the outcome, checking-out emotionally if it looks bad, and being happily surprised if it goes better doesn’t seem like a good plan here.

I haven’t had any luck with the don’t-look-down approach, where I’m super optimistic and then deal with what happens if it goes badly when that comes. I wish I could take this mindset.

So I’m trying out the one-day-at-a-time approach. This has some drawbacks. Each day feels smaller and darker than the one before. Even if this goes very badly, we have got a long way to go. It’s still hard not to assume the worst or at least be haunted by it.

It also feels like I’m ignoring the gravity of the situation. We’re low drama, but the practical, deal-with–what-the-day presents feels incongruous with the seriousness of what’s happening.

This thing is happening. How do I do it well?

(I’m very little inclined to engage mystic-religious-intention of the universe type thinking. To the extent the universe has intention, it can go f*ck itself.)
posted by elmonobonobo to Religion & Philosophy (20 answers total) 7 users marked this as a favorite
 
I am so sorry for you and your family. Are you in a "well spouse" support group?
posted by BibiRose at 10:01 AM on January 31, 2013 [1 favorite]


Tough situation. First thought is therapy for you. Second thought is to make sure you're discussing this with your wife - even thought it probably seems like a strange/difficult conversation chances are she sees/feels signs of your smaller darker world.

The other thing I sort of thought of was that it sounds like maybe you could focus on planning something to look forward to each week? Even if it's just dinner at a favorite restaurant, or a movie out, or whatever. It sort of looks to the future, but no so far to the future, and also allows you to spend time with the woman you (presumably) love?
posted by dpx.mfx at 10:05 AM on January 31, 2013


I'm sorry you, your wife, and all your loved ones have to go through this.

I don't know if there's a right way to "do it well" - it's really about providing your wife with as much as you can to provide her with comfort, and take care of yourself at the same time.

Perhaps working on a bucket list of things you can do together might provide some comfort, some things to do as a couple, and something to look forward to. At the same time, it might do the exact opposite, in which case, all you can do, is be there for her and for yourself.

I wish you, your wife, and loved ones strength in this battle you must fight.
posted by bitteroldman at 10:05 AM on January 31, 2013 [2 favorites]


I am so sorry. This is terrible.

How long has it been since you got the diagnosis? Eleven years ago, my sister-in-law got a very grave diagnosis, and it took us all a long time to really engage with the emotional resonance of what was going on. That was OK, though, because it left us with the energy to actually deal with what the day was actually presenting.

I realized later that I had been in denial, and that denial gets a really bad rap but is actually a vital part of the grieving process. It's not just a box to tick to try and rush through until you get to some magical point where you're OK. It's an excellent coping mechanism to give you some time to adjust to the "new normal" (which is remarkably similar to the "old shitty") before the real weight of what's going on crashes around your shoulders.

Which is to say, I'm not a counselor or a grief specialist, but I think you're doing fine. Believe you me, the seriousness of what's happening will find you, you don't have to go looking for it. I would focus right now on the day-to-day stuff and let the rest of it come as it comes. And yes, definitely find a well-spouse support group, or a counselor, or anything else you can, because when it comes, it is going to suck. :-( Love and light to you and yours.
posted by KathrynT at 10:05 AM on January 31, 2013 [15 favorites]


Just your presence and dealing with the day to day stuff is an INCREDIBLE support for your wife. Practicality is a perfectly fine approach to things. If you take stock on a daily basis and focus on what you are doing right, your outlook may improve.

Best of luck, feel free to PM or email me if you ever want a patient ear. Fuck cancer.
posted by Mistress at 10:18 AM on January 31, 2013 [2 favorites]


I have no idea if this is relevant, but:

My spouse's and my best "together time" is outside in the little hot tub we bought for this purpose. Evenings when we go out there for a soak after the kids go to bed, we have great conversations and are very engaged with each other. It's relaxed, intimate time that simultaneously has no distractions; and is also pleasant enough in itself that we aren't bored even if we're not talking.

Evenings when we don't go out there, we usually wind up separately killing time on the Internet. No good.

Anyway, I'm not sure if I'm reading your question right, but if part of "how do I do this well" is "how can I make sure that our bond is strong during this difficult time," then this is a small thing I'd recommend. Good luck to your family. I'm so sorry this diagnosis has come into your lives.
posted by fingersandtoes at 10:20 AM on January 31, 2013 [1 favorite]


I'm going to suggest a support group for spouses/families too, even (maybe especially) if it's not something you'd tend to do.

I tend to find such things, well, not to put too fine a point on it, bullshit. But in a similar, though not as dire, situation, I have found just being around strangers who get where I might be coming from an immense relief. Understanding strangers who are going to be automatically compassionate based on shared experiences are so much easier to unload on than friends and family because you don't worry about their reactions to your feelings.

And it's made me a much better partner to somebody going through a serious medical thing -- so, as cheeseball as it sounds, doing it for him, even if it requires me going out of my comfort zone, makes it worth it.

Best wishes to you and your family.
posted by MCMikeNamara at 10:23 AM on January 31, 2013


The wellspouse.org forum has been very helpful for me.
posted by michellenoel at 10:32 AM on January 31, 2013 [2 favorites]


When I was going through cancer treatment (caveat: I had a pretty good prognosis, though we were aware that there were underlying issues that could make it go bad), my partner and I also tried to be pretty low-drama about it, and also didn't see the universe as having any agency in it; it was just a thing that was happening, and it was a thing that sucked, and we would get through it the best we could.

For his part, my partner said that the thing that kept him emotionally engaged during the roughest times was the sense that supporting me through all of it, no matter how it turned out (i.e., whether I lived or died), was something genuinely meaningful that he could do in his life. He said he felt that while he'd certainly lived a good life without really harming anyone, neither had he really contributed in a significantly positive way to anyone or anything up to that point (such as a political cause, raising a child, etc.). So being as supportive and emotionally present as possible for me (even when it was extremely challenging) was something he realized he wanted to do not just because he loved me, but also so that he could look back at his life and know in his heart that he made a significant difference to someone else's comfort and well-being.

I don't know if any of that will have any resonance for you, but I put it out there just in case it might be a way of creating some meaning out of situation for you. I'm so sorry you and your wife are going through this. Above all: be gentle to yourself, and one another. I know this sounds cheesy as all hell, but when in doubt, let your love guide you.

All warm wishes for peace and healing to you both.
posted by scody at 10:53 AM on January 31, 2013 [19 favorites]


It also feels like I’m ignoring the gravity of the situation. We’re low drama, but the practical, deal-with–what-the-day-presents feels incongruous with the seriousness of what’s happening.

It's not. It's okay. It's a long road you're starting down now, and there will come a day when the grim reality of the future matches the grim reality of the day you're having and there will be a sea change in how you look at things.

But today is okay. Today everything is holding. Today is not that day. And it's okay to not be distraught today. For both of you.

FWIW I found out today that my dad has terminal cancer and has chosen not to treat it. This is dire news, but it isn't happening today, and for today, I'm okay and he's okay, too.
posted by DarlingBri at 11:27 AM on January 31, 2013 [7 favorites]


First of all, I'm truly sorry to hear something like this. I have some vague idea of how you must be feeling. My mom has cancer, and last year her prognosis was similar to your wife's - the doctors were very sure she didn't have much longer to live. (She has since improved, and her chemo is down to once a month now, instead of once a week.) Before her condition improved, one thing that was particularly difficult for me and my stepdad was that she lost the will to live, and we had to do our best to remind her that life was worthwhile.

One thing that really helped me during that time period was setting a personal goal for myself: namely, trying to be the best son I could be. Realizing that my mother's time might be very limited made me focus more on making that remaining time as happy for her as possible. Now, when I have to walk her through some computer issues on the phone for two hours, I don't get frustrated at her for not listening when I originally explained it to her - instead, I simply say "No problem, that's what I'm there for." When she occasionally wants a cake from the best bakery in Boston (which adds another hour onto my three hour drive to visit them) I don't complain - I just spend the extra time to get her the cake and some champagne to go with. When you have a limited window of time to make somebody feel cared about, it's important to do the most you can with it.

I think that setting a personal goal of trying to make your wife as happy as possible in the time you have left might take your mind off the cancer itself. Also, studies show that a positive outlook really does improve one's odds against life-threatening illness, so by doing this, you might actually be able to impact the prognosis to some degree.
posted by wolfdreams01 at 11:46 AM on January 31, 2013 [4 favorites]


Make the time you have left with her - 2 to 5 years or less, realistically - as fucking awesome as it can possibly be.

It's hard to imagine, but someday, a long time from now, you will have gone through this and recovered. You will eventually fall in love again and remarry and you will be happy and fine again, someday, really. But this is going to be part of the story of your life, now, and you get to help write how it goes.

Sit down with her and make a bucket list. What do you want to do together? Sky diving? Hot air balloons? Tattoos? Morocco? Camping in the backyard with your kids? Make every meal delicious. Don't sit around and watch TV, make love every night, take day trips on the weekends. Start a kickstarter to fund an epic trip for your family to a place she always wanted to visit. Record video interviews of her for each of your kids birthdays, graduations, weddings so they can watch them later. Do

Fill this time up with wonderful happy memories so that you know you were the best husband you could possibly have been, and that you enjoyed her as much as you possibly could have, and that she fit as much happiness as possible into the time she had.

You'll regret what you didn't do more than what you did.
posted by amaire at 12:14 PM on January 31, 2013 [2 favorites]


One of my closest friends got a similar diagnosis three weeks ago.

This is the way I think about it. Eventually anything will cause pain. Nobody escapes pain, illness and death. So it's not OK; it's not going to be OK; but it's the way things are. And there is still love, we can still love each other even if we're getting hurt, and there is still meaning and there is sometimes beauty too.

In Zorba the Greek one character says to the other "do you have a family?" and he says "yes, I have a wife, children, house -- the full catastrophe!" Similarly, Jon Kabat Zinn who is a nonsecular meditation teacher wrote a book for people going through crisis called Full Catastrophe Living, and that might be worth checking out. (They teach a class based on JKZ's University of Massachussetts course which is called Mindfulness-Based Stress Reduction and which is often offered to people with cancer and their caregivers at local hospitals -- you might check it out.)

I guess what I'm trying to say is there's this way of approaching life which I think of as kind of USian where there are "good lives" where nothing bad happens and then "failures" where you get cancer, your wife gets cancer, you get depressed, etc., and I think that framework invites us to check out when things get harsh because pain=failure so you might as well disengage. But I also think there are valuable lessons for us in the wreckage, and that we're all dying so it's worth it to just love the hell out of every moment we are able to.

I just signed up for a Mindfulness-Based Stress Reduction class at the local hospital (I did it before for more mundane stresses, and it both increased my presence-in-life and increased my tolerance for stuff that was upsetting me). And I'm trying to engage each day as its own thing -- which isn't to say "don't have big feelings" -- just that Tuesday can have beauty even if Friday is going to be super painful, and Tuesday can be something meaningful even if it isn't going to end the way you want it to.

Sorry everything is so hard.
posted by feets at 3:17 PM on January 31, 2013 [3 favorites]


I think you ARE doing it well. Just dealing with whatever the day presents you with, and planning to keep on dealing with it day after day, is magnificent and heroic. Nothing more is required.

The "bucket list" approach doesn't work well in some situations. With serious illness, by the time you realize that it's really time to be checking off the things on your list, you're often too sick to do them or enjoy them, and then disappointed that you didn't get what you expected from the experience. Finding the bits of beauty that are available in your ordinary, everyday surroundings and experiences can be just as satisfying (maybe more so?) than checking off a bunch of exciting adventures. Even though each day may seem smaller and darker than the one before, there are still bits of brightness to be found and noticed. That's enough.
posted by Corvid at 3:44 PM on January 31, 2013 [2 favorites]


Finding the bits of beauty that are available in your ordinary, everyday surroundings and experiences can be just as satisfying (maybe more so?) than checking off a bunch of exciting adventures.

I totally agree with this. The pressure to go out and Do As Many Significant Things As Possible (or have sex every day, or whatever) can be overwhelming when you're dealing with serious, chronic illness. Being seriously ill is extremely exhausting, both physically and mentally, and cancer treatment can be painful or otherwise physically distressing. So I indeed had a lot of beautiful, uplifting, even ecstatic moments while I was going through treatment, but they were all very "modest" in terms of the actual events: getting to spend some quiet time with my nephews at Thanksgiving, noticing new buds on the trees when I was strong enough to take the dog for a walk, eating a meal with my cousin and playing with her new baby.

A technician told me early on in treatment that I would be presented with a treasure every day -- I didn't have to look for it; it would just be there, as long as I was open to it. This was a really useful way of framing it to me (and to my partner). Glorious moments don't have to be dramatic (though of course there's nothing wrong with doing dramatic things if that's what you're both up for!); they just require you to both be present and appreciative.
posted by scody at 3:59 PM on January 31, 2013 [4 favorites]


My dad has a similar prognosis. I think it must be quite different dealing with this as in a partner compared to a parent, but this is what's been (sort of) working for me so far.

I am intellectually aware that bad times are coming, but my mind shies away from thinking about them in too much detail. Normally I'm the sort of person who likes to have all available information, even if it's discouraging, but in this case I know I can't think too closely about it. It terrifies me. But that's OK. Knowing in detail what's coming wouldn't really help me prepare or cope and there's no point wasting potentially good times dreading the bad, so I have officially given myself permission not to think about it.

Day-to-day I keep putting one foot in front of the other. I can't feel the enormity of this all the time and I can't dwell on it - it would drive me mad. When there is new bad news I give myself a few days to get used to it. During that time I cut myself as much slack as I can reasonably manage and I let myself be sad about it. I find given a week or so I usually stop feeling so acutely upset and return to baseline, so I just let my brain do that on it's own schedule.

I'm so sorry you and your family are facing this.
posted by *becca* at 4:08 PM on January 31, 2013


I am pretty sure Jon Kabat-Zinn's meditation recommendations in all of his work are secular. Seconding the good suggestion of Full Catastrophe Living.

I am so sorry that your wife, and you, and your family and friends are going through this tough passage. I wish you in particular the gift of being able to accept help gratefully where it's offered, and to seek it out when you need it.
posted by Sidhedevil at 4:11 PM on January 31, 2013


I'm so sorry for your wife and family. Whatever way you cope with this is the "right" way, this is uncharted territory in your lives and you cope as you can cope. I hope that things work out for her.

If you have some time before the chemo/radiation/surgery start, even if its a brief period, perhaps plan a happy memory or take some video of everyone together and possibly of your wife on tape talking and telling stories.

Best wishes that she has a great response to treatment.
posted by artdesk at 8:19 PM on January 31, 2013


I don't think you're necessarily doing anything wrong. The fact that you're feeling small and lonely is because your wife is dying, not because you're handling it wrong. I hope you look into therapy or a well spouse support group to help you if you feel things are getting beyond your ability to manage. You don't need to change who you are, but it might help to forgive yourself a little, to stop worrying about how you should be feeling, and just let your feelings emerge as they will.

But, it is also helpful to have a project, a task, something to help organize these feelings. This might sound stupid, but how about starting a book (or a Word doc, whatever) where you keep track of one thing that you did with your wife that was beautiful, good, funny, whatever. Could be a tiny thing-- I straightened her collar and she smiled, she laughed at the way I flipped a pancake, whatever. And then you have that as a goal each day: find something to do with her or for her, or just pay attention and recognize something during your time together that is good, that is love.

This reminds me of the vows my husband and I said to each other on our wedding day: "I promise to be your good when everything else is bad." I think she will find this true of you; I wish you both love and peace on this journey you're on.
posted by elizeh at 8:20 PM on January 31, 2013


Search for "The Last Lecture" by Randy Pausch on youtube. The situation was reversed for this couple, but it appears as though they coped in a particularly smart and graceful way, if there is such a thing.
posted by txtwinkletoes at 9:15 PM on February 2, 2013


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