How can I save my love from dying?
May 15, 2012 2:02 PM   Subscribe

Knowledge-based hope is much needed. Since my first plea -- which helped a lot, really, this month of May has been sorrowful for Maria João and for me. A metastatic brain tumor (around 3 cms) was detected and removed. Gamma-knife surgery is next. Tomorrow starts the search for other cancerous tumors in her body. We both feel, against all odds, that we will be lucky. But what should we do? What should we hope for? Statistics are againsts us but we love each other truly. Two months ago we found a beautiful house to move into. We could move in come July, after all the tests are made. What should we do? What should our attitude be? Should we move or stay put? Should we change country? Should we prepare to die? Or live as much as we still can? Desperate questions need realistic answers. We're fighting for our lives here. Please tell us, knowingly, how to behave. For what it's worth - usually nothing - I think this time we'll be lucky enough to survive. Whatever happens.
posted by MiguelCardoso to Health & Fitness (25 answers total) 18 users marked this as a favorite
Best answer: Ah, Miguel, so sorry to read this. You know, I have seen several people recently deal with brain tumors, and as you've probably been told, once the cancer is in the brain the chances of long-term survival are extremely slim. And the heroic measures that might be taken pretty much eliminate the "live as much as you still can" option. My own choice would be, seize the day, move into the beautiful house, enjoy each other, stay active, eat as healthy as you possibly can, and don't despair. Medically do what's prudent but not what's going to be debilitating, because that eliminates the opportunity for many beautiful days.
posted by beagle at 2:11 PM on May 15, 2012 [27 favorites]

Best answer: I would have said as much, had I collected my thoughts. My heart goes out to you.
posted by y2karl at 2:14 PM on May 15, 2012 [1 favorite]

Best answer: I have not seen you in a long time, Miguel. I am truly saddened by this news. I agree with beagle that quality-of-life is really important right now.

That said, you do not know about any other metastases in her body at the present time. So go to the test (PET scan?) and be prepared for any kind of news.

It is scary. Try to enjoy today and tomorrow and the day after that.
posted by Danf at 2:18 PM on May 15, 2012 [1 favorite]

Best answer: Oh, Miguel, I am so sorry you are going through this. I can only tell you how I behaved when I was going through my own cancer treatment two years ago. I wanted to live as well as I could, so that I could die as well as I might when the time came -- whether the time was a few months, a few years, or a few decades. A technician early in my treatment told me simply: "you will be presented with a treasure every day. You don't even have to look for it -- just know it's there, and you will see it." To a very real degree, that's how I lived every day -- the awful and excruciating days (of which there were some), the beautiful and sublime days (of which there were some) and all the days in between (of which there were a lot). I channeled my inner Gramsci: I was a pessimist of intellect (meaning I looked as unblinkingly as I could at my mortality) and an optimist of will (meaning I believed that the problem of my cancer would have a solution, which I could engage in making come to pass).

In the end, I can only say that I believe you should do whatever will bring you and your beloved beauty and comfort and joy and laughter, even in the midst of the fear and the pain and the grief. Eat well, love well, gaze upon the world well, for as long as you may have.

Much love to you and Maria João. Memail if you like.
posted by scody at 2:22 PM on May 15, 2012 [48 favorites]

Best answer: MiguelCardoso, my heart is with you both. I have no advice. Just a story.

In the last days of my mother-in-law's life, when she knew that death was near, she had a long conversation with someone I consider family. He was going to Europe, and they both knew it was the last time they would speak. She told him this: "Go well. Pick every grape."

Through tears, I wish this for you and Maria João: Pick every grape. Find every joy, savor the moments, do what you can to build up your treasure house of loving memories. May your hope bear fruit.
posted by MonkeyToes at 2:39 PM on May 15, 2012 [4 favorites]

Response by poster: Unknown friends,

All our known and beloved friends and family have helped. But they want, above all, reassurance that all is well.

We cannot be honest with them, we pretend to be hopeful. We do what we can so that they suffer least.

But with you we can be true and unburden ourselves, not pretending to be something we are not.

You have no idea how much you mean to us.

And I mean this as a general norm. That every one of us on Metafilter feels, when we reach out to our real, eternal and metaphysical friends.

That you don't lie to us.

And leave us with how we feel. But more intelligently.

Thank you!

(And may you all know nothing but happiness and doubt all your lives)

With lots of love,

Maria João and Miguel
posted by MiguelCardoso at 2:40 PM on May 15, 2012 [50 favorites]

Best answer: Damn, Miguel. I am sorry to hear this.

Live every day to the fullest, try to keep in good humor on the bad days.

Would mail be any kind of help at all...whether actual postal mail, email, or memail correspondence? If nothing else it could be an honest sounding board for you both. Let us know...I'm sure several of us would heed the call.
posted by fluffy battle kitten at 2:48 PM on May 15, 2012

Best answer: My friend's father passed away last year after a long battle with multiple myeloma. He was a brilliant cardiologist. He went to the Galapagos, cycled in France, bought a sailboat, drove the hell out of a Mini Cooper, moved, gazed at the stars again, basically everything he could squeeze from life in a few short years. I would follow his example.

Sending both of you all my love.
posted by Mercaptan at 3:46 PM on May 15, 2012 [1 favorite]

Best answer: I am glad that you and Maria João feel you can reach out to MetaFilter in a time like this. I hope that her prognosis only improves as you go forward through this unknown together.

My suggestion to you is to reach out to a hospice or palliative care organization now. In my brief research, it seems that there is not a strong hospice movement in Portugal, but there is a small one, and it is growing. This organization, Madrugada, is based in the Algarve, but I am sure they would know whom to reach out to in Lisbon.

Often, even in places with robust hospice services, people wait until death is imminent to contact a hospice; they think it is only for those very near death. But hospice is for anyone who has a life-limiting illness, whether that limit is one of days or years. In the last weeks or days of life, hospice services can provide palliative care that aims to make a person's last days as comfortable and well-lived as possible.

For those who may have a life limiting illness, but don't yet know for certain, hospice care providers can help you determine how best to live well with a potentially terminal illness, and how best to plan for the future, for when one may need full time palliative care. Services of specific hospices differ, but many provide counseling, clear and frank information about the last stages of life, and psychological and emotional support.

Reaching out to hospice does not mean one is giving up, or being cowardly in the face of death. In fact, it is quite the opposite. Honestly facing what may come, both good and bad, and making plans for how to live one's life well in light of a possibly life-limiting illness is one of the bravest acts I know.
posted by ocherdraco at 3:46 PM on May 15, 2012 [10 favorites]

Best answer: Work on living better. Live life with gusto. If you desire to move elsewhere, do that.

My father had colon cancer in his late 60's. He was supposed to die. He lived and the clinic interviewed my mother and changed its practices based on what she said. They emphasized hydration and good nutrition at home.

I spent a year at death's door with a different condition. Doctor's told me "People like you don't get well." I have spent the last 11 years getting well.

Do your research. Eat right. Live well. And don't give up until you are actually dead.

Best of luck.
posted by Michele in California at 4:01 PM on May 15, 2012 [1 favorite]

Best answer: I am so sorry, Miguel. So many good wishes your way.

Having spent much of the past decade in a similar situation, there are a host of competing ways in which time gets warped: the nagging sense that tomorrow will bring a setback that's beyond your control; the parcelling up of life into chunks by the timetables of treatment and waiting; the days where the joy of living tangibly manifests itself. It's a fight to seize the latter, to demand the latter, to live by your own clock and calendar and almanac. I'd agree with ocherdraco about hospice services: a good one will be a bulwark against the external urge to passivity.

"Live all you can; it's a mistake not to." And I think your example, which you've graciously shared with us over the years, is proof.
posted by holgate at 4:05 PM on May 15, 2012

Best answer: Should we prepare to die? Or live as much as we still can?

Same thing. You have the freedom to focus on just what's really important now, loving each other and whatever else you hold most dear, living in the moment. Whether the disease goes away or not, you will still have spent your time well.

I'm very sorry you are in this situation, but glad that you're facing it together and with some warning.
posted by LobsterMitten at 4:11 PM on May 15, 2012 [4 favorites]

Best answer: Dear Miguel and Maria João

My mother had metastatic tumors, which had come to her brain by way of her lungs and before that, her breast. She lived a long time after her diagnosis, from the time I was 12 to seeing me off to college. I can't say that every day in those years were good for her, there were times when she was in pain from the treatments, but what hurt her the most was her fear that she was leaving her loved ones, that she was somehow leaving things undone. I didn't have the words then to be able to tell her that we would be OK, that she shouldn't worry about us, and that she should feel free to do all the things she thought she would do someday but never did.

I think when we are sick, the natural impulse is to try to hunker down in the dark and wait to get well. But maybe it's better to spend that time living rather than waiting.
posted by jamaro at 4:14 PM on May 15, 2012 [6 favorites]

Best answer: I am so very very sorry to hear this, Miguel (this is the old Bunnyfire in case you didn't keep up with my name changes...)

So much depends on what the doctor tells you. I will say this: Quality of life is important.

I won't go into gory details but from looking at what has happened at other friends, my decision should I ever be in these shoes is this-I will always and ever go for best quality of life rather than fight for length of life alone. That having been said, never assume anything is a death sentence. God rules, not the docs, and more often than one might think God chooses to make fools of doctors.

Live, and love, and take care of each other. As Jesus said, each day has enough trouble of its own. Don't borrow any from tomorrow.

And I just wanna say I love you both.
posted by St. Alia of the Bunnies at 6:16 PM on May 15, 2012 [1 favorite]

Best answer: Please share the prognosis with your loved ones, and ask for help and support as you need it. You are going through enough without having to worry about upsetting them. They can handle it. They love you--they will want to know and help.

I'm sorry you are facing such a sad ordeal, but glad you are facing it together.
posted by elizeh at 8:00 PM on May 15, 2012 [1 favorite]

Best answer: Querido Miguel y Maria João
The wonderful scody has pretty much said it all as did beagle.
It has to be quality all the way. You remember that old saw life is too short for.....
Well; you are right up in front of that now. Remember to look after yourself as well as your amour. If you fade you are no strength to her.
If she wants to move house do so, and live as much as you can in the moment, in the now. You will need much strength.
Desde mi corazon y mi alma un abrazo a los dos.
posted by adamvasco at 12:37 AM on May 16, 2012 [1 favorite]

Best answer: Miguel:

Do whatever means you'll spend the best time together. Do whatever means you know you love each other more every day. Will moving house or changing country give you more of both? If so, do it. If not, spend more time holding hands where you are.

The only thing we'll really regret when our times come is that we didn't see those we loved as often as we could, and we didn't tell them we loved them as often as we could. Everything else is a distraction, an illusion.

If we place our love for one another first and foremost, we live life to the fullest and prepare for death at the same time. Knowing that you've done everything that matters is an enormous source of peace and comfort. The worst could happen next month, tomorrow, right now - but we'll go knowing that we loved and were loved with every fiber of our beings. Without a fear of regret lingering in the backs of our minds - because we've taken care of what's important - we enjoy the present more. After that, every extra day we have is icing on the cake.

Stay safe, you crazy bastard. We miss you.
posted by obiwanwasabi at 2:30 AM on May 16, 2012

Best answer: I'm so sorry to hear this. I think living well at these times includes trying to communicate well with your family. It's hard, because no-one knows how to do this, in these circumstances. However, they will want to help. But it's hard.
posted by carter at 6:33 AM on May 16, 2012 [1 favorite]

Best answer: If it won't get in the way of the things you need to do now, move into your beautiful house and live there together a long, long time.

If it would just cause more bother in a difficult time, or would keep you apart more than you need to be apart, wait for now. And then, when she's ready, move into your beautiful house and live there together a long, long time.
posted by pracowity at 6:44 AM on May 16, 2012

Response by poster: Well, that certainly helped. Say what you like about modern medicine, but old-fashioned solidarity benefits the soul straightaway.

We shall be moving, according to your advice. Imagine our delight! Everything - down to the last pillow - had been planned. We can afford only one small step at a time. But there is a schedule. And time will not pass unfurnished.

I shall never, ever make fun of the American trope of "feeling your pain", much derided by excellent Bill Clinton's enemies. We understand it now - and gain from it. There must also be an opposite - we are less pained by your feeling. The grammar and syntax suck. But you get our meaning.

Thank you!

Please let this encourage anybody who is lost for words to use the generous intelligence of all who read and write on MeFi to make their journey less daunting.

Old friends, never seen, but deeply felt, are specially effective. New friends, never hoped for, are just as good.

Sobs and cheers all around,

Maria João and Miguel
posted by MiguelCardoso at 1:41 PM on May 16, 2012 [16 favorites]

Best answer: Miguel and Maria João,

I wish you peace on this journey, and the ability and opportunity to find some good in every single day.

I have no wisdom to offer, but did want to point you to this askme from a few days ago that is related and may be worth your time to read.
posted by HuronBob at 2:20 PM on May 16, 2012

Best answer: Hi Miguel

Glad you're planning to move house. You wanted knowledge-based hope; and it's known that a delighted outlook does deliver a survival advantage.

In your 2009 post you wrote: We live in Portugal - it's a small country with not that many specialists and a noticeable time-lag (and conservativeness) regarding the latest discoveries.

Not three years later Portugal has the world class Champalimaud Foundation, up and running, complete with on-site clinical trials. There's more hope, again. I love that the Foundation refers to its research centre as 'The Centre for the Unknown', because we never know.

And may you all know nothing but happiness and doubt all your lives ... ditto, Miguel.

Love to you and Maria João
posted by de at 6:05 AM on May 17, 2012 [1 favorite]

Just read this - sending you lots of love.
posted by sgt.serenity at 12:30 PM on May 11, 2013

This article from last month seems to indicate that Miguel and Maria João are doing well. Hooray!
posted by ocherdraco at 8:33 PM on May 11, 2013 [5 favorites]

And (more recent), he has a book out about the experience. (Book link)
posted by beagle at 10:56 AM on May 14, 2013 [2 favorites]

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