Cancer Doctor Peter Bach on Losing His Wife to Cancer
May 6, 2014 9:27 PM   Subscribe

The Day I Started Lying to Ruth - "I realized that I now had a secret we couldn’t discuss. I could see her future. Where she would end up. What she might look like. How she might suffer with me standing helplessly by her side. She couldn’t."
posted by Memo (37 comments total) 41 users marked this as a favorite
posted by pallen123 at 10:04 PM on May 6, 2014 [3 favorites]

A curse for anyone who sees the carnage of cancer every day. Thank you for this link...
posted by Alexandra Kitty at 10:08 PM on May 6, 2014

His bit about the loss being like a phantom limb really hits the mark. There are so, so many times of great joy, or pain, or banality where I find myself wishing my Dad was still around to share that moment with me.

Separate from that, there is absolutely a divide between the people who want to know every last gory detail, and those who absolutely don't. Neither of my parents wanted to know anything at all, so my brother and I had to carry the burden of knowing all the treatments were purely palliative. In contrast to the phantom limb comparison, the author tried to capture the dual weight of knowing the loss was coming and still needing to act otherwise - but he really doesn't do justice to how horrible that combination really is.
posted by NoRelationToLea at 10:14 PM on May 6, 2014 [10 favorites]

Damn, that was sad. Made me cry.
posted by flapjax at midnite at 10:26 PM on May 6, 2014

One of the writers I follow on Twitter is watching his young daughter suffer from brain cancer, and the posts he writes are heart-wrenching. It's the small, quiet details that hit the hardest, like her wanting to play with a toy beyond her age group because she knows she won't live to see that age.

It can't be said more succinctly: Fuck cancer.
posted by fifteen schnitzengruben is my limit at 10:30 PM on May 6, 2014 [11 favorites]

He just seems so very selfish. I would hate to see someone I loved suffer so much, and it's such a disrespectful, shitty, selfish thing to do to lie to someone you love and put them through genuinely miserable treatment in order to keep them around longer, so as to satisfy your own desires.
posted by wuwei at 11:08 PM on May 6, 2014 [2 favorites]

posted by justsomebodythatyouusedtoknow at 11:13 PM on May 6, 2014 [1 favorite]

Wuwei, it's strange that we had opposite reactions. I was just thinking that I hope one day I find someone that loves me as much as this man clearly loved his wife.
posted by Dynex at 11:13 PM on May 6, 2014 [14 favorites]

(And, of course, that I love equally.)
posted by Dynex at 11:14 PM on May 6, 2014 [2 favorites]

“One of us has to be the grown-up,” I finally said.

Jesus. You shouldn't have to ask your wife's doctor to be the grown-up. He's the specialist. He's the one treating her. If you're not comfortable, as the husband, being the one to tell her she's dying -- he needs to step up and do his freaking job.
posted by vytae at 11:21 PM on May 6, 2014 [3 favorites]

I knew, with certainty, that I would soon be confronting an emotional abyss that I could see just ahead. And I had this strong desire to run toward it. To just get on with the sorrow.

I know this feeling well. It's just the worst. First time I've heard someone else admit to it.
posted by klanawa at 11:21 PM on May 6, 2014 [21 favorites]

Devastating. Thank you for sharing this.
posted by town of cats at 11:28 PM on May 6, 2014 [1 favorite]

it's such a disrespectful, shitty, selfish thing to do to lie to someone you love and put them through genuinely miserable treatment in order to keep them around longer

I don't think that's a fair interpretation of Bach's role in his wife's treatment. He deferred to her (top-tier) oncologists to read her scans and deliver her prognosis, allowing him to serve his wife as a husband, and not as a medical provider—a luxury that those of us who aren't medical professionals can and do take for granted.

I thought the piece was beautifully written, and all too reminiscent of watching my father succumb to a still unbeatable disease.
posted by evidenceofabsence at 11:33 PM on May 6, 2014 [23 favorites]

Dynex, I recognize that my attitudes towards death and dying are quite different than a lot of people's. I've watched several family members die long, lingering, painful deaths with enormous suffering, and it's pretty terrible. In the last few years I've also had family get sick and give advance directives forbidding long stays on the ventilator, etc. One of my uncles suffered a massive heart attack a few years ago, after years of debilitating arthritis. As we sat in the ICU, his wife, my aunt, told me that he'd already asked that they not keep him on the ventilator for months, as had happened with his own mother. On my way out of the ICU, I stopped one of the nurses, and I asked her-- is he going to wake up? Is there any chance? Please be honest with me. And she said, no he's not going to make it. There's no brain function. Our extended family filled up the ICU all weekend, coming in to pay their respects, and then, once that was completed, the hospital disconnected his ventilator and he died.

I also watched one of my grandfathers go through repeated cancer surgery and treatments and linger on a ventilator for months, having heart attack after heart attack, until, finally, the do not resuscitate order came down-- I can't remember if it was him by this point, or my grandmother that gave it. He suffered so much. I'll never forget the last time I saw him, gaunt, unconscious, on a ventilator, in the ICU. In the end he couldn't eat either. He was a man who loved to eat, and in the end they fed him through a tube.

Sometimes , when people are dying of a fatal illness, they'll try to prolong their lives, and suffer ridiculous treatments because they know their family members will be so utterly destroyed when they die. There is something noble about that, to be sure. And at the same time, if someone was doing that for me, I'd ask them not to, not to unnecessarily prolong their suffering on my account.

To me, there's something to be gained by facing death clearly. I know I wouldn't want to go through repeated surgeries if there was no quality of life, and in that situation I'd rather spend time with friends and family.

This is all a question of values, and I acknowledge everyone brings a different set to the discussion. But to me, interpersonal honesty (about the big things) is the mark of trust and genuineness in a relationship. I'd certainly want my partner to be honest with me if I was terminally ill and they were in a position to evaluate me. I wouldn't want to think that my partner thought I was too weak to withstand the truth.

Someone I know told me, that I have a very matter of fact attitude about death and dying, and perhaps, it's because I've seen so many people suffer through terminal illnesses and die, and also, had friends of friends killed in violent, sudden catastrophes. Or maybe it's because I've had my own close calls, and to be truthful, the first time was a real meltdown, but subsequently, it's just been one of those things where shit happens and then, somehow, I survive.

The article and thread are interesting to me also because I have close friends who are medical professionals, and they've all had their share of terminal patients. Almost all of them have told me that they'd never want to see someone they love go through that.
posted by wuwei at 11:37 PM on May 6, 2014 [22 favorites]

posted by Joe in Australia at 12:40 AM on May 7, 2014

Zugzwang is a wonderful word for this. And there is a very different argument to be made when you have a young child, somehow. Being able to give up more bad days for a shorter kinder end, or trading your own pain for a few more months when they are so little.
posted by viggorlijah at 1:08 AM on May 7, 2014 [2 favorites]

Just... stop talking about kids with incurable cancer. It's horrendous. I can just about manage reading the adult stories. Wanting to play with older age group toys because she wont make it?? Graaaaah! It's just so damn SAD! I want to abscond from work and take my son out of nursery.
posted by trif at 3:03 AM on May 7, 2014 [5 favorites]

Thank you, that was a lovely piece, the emotional honesty in it rang out with the clarity of a bell.
posted by smoke at 3:24 AM on May 7, 2014 [1 favorite]

"Plenty of people to do things with, but nobody to do nothing with." That's... an extremely apt description of depression and grief in all its forms, the problems of maintaining connections through all that.
posted by Sequence at 3:51 AM on May 7, 2014 [13 favorites]

There are so, so many times of great joy, or pain, or banality where I find myself wishing my Dad was still around to share that moment with me.

I'm amazed at how often those moments aren't actually sad anymore. When for a year, every time that thought entered, it was sad, and poignant, and now it's just the background noise of going on with life. A gentle reminder to share with the people who are around, while we can.

I wish like hell these lessons didn't take so damned long to learn. brb: calling mom.
posted by DigDoug at 5:39 AM on May 7, 2014 [1 favorite]

My oncologists lied up one side of the road and down the other to me during my treatment. I'm sure it was all "for my own good" and "so I wouldn't worry," and I guess I technically could have done my own research and shopped around for other doctors, but I was kind of too sick to do that at the moment. They tried to get my family to keep things from me, but they didn't know me well enough - I can usually tell when that's going on and badger it out of them.

In hindsight, I'm dealing with long-term aftereffects of treatments whose benefit was dubious at best, which I didn't want, and was browbeaten into.
posted by The Underpants Monster at 6:14 AM on May 7, 2014 [5 favorites]

This was crushing, and brilliant. Best of the Web.

Thanks for posting.
posted by Aizkolari at 7:02 AM on May 7, 2014 [2 favorites]

He just seems so very selfish. I would hate to see someone I loved suffer so much...

I wouldn't dare to criticize his actions without having been in the same situation -- i.e., having so much specialized medical knowledge about my loved one's condition -- myself. And I have not; indeed, I sympathize with him.
posted by wenestvedt at 8:00 AM on May 7, 2014 [10 favorites]

How We Die is highly recommended for understanding the process of death in the Modern West.

Also Useful:

How to talk to people and make plans for death "What If.....Give the Gift of Preparedness To Your Loved Ones" is an excellent book for beginning conversations and writing out plans, both spiritual/emotional and practical.

Living Will/Advance Directive Statewide/National and International living wills to make sure you and your loved ones have their wishes followed.
posted by lalochezia at 8:32 AM on May 7, 2014 [2 favorites]

Bach highlights the information he has that his wife doesn't have, but in so many ways she knows more than he does. We can watch other people go through it but we will never know what it's like to be that patient until we are. Two members of my immediate family have died of cancer at an early age and both of them became very, very different mentally than before the illness or before the illness became clearly terminal. I'm not talking mental impairment, but their whole view of the world changed. When it's your partner I think you are closer to that change, and can appreciate it, but it is still not you experiencing it.
posted by BibiRose at 9:34 AM on May 7, 2014 [4 favorites]

It sounds to me like the wife, the husband and the oncologist did a pretty good job of balancing quality life against debilitating treatment. It seems to me that, for metastatic cancer, this is a pretty good death. I started to feel envious because my brother died of his cancer so fast, and he wanted that chance to fight it, the possibility of winning, even just winning 6 months, and the chance to have some special times with family and friends. Even so, he was able to die at home, surrounded by family caring for him, loving him and comforting him and each other. I wish we would do more to research the environmental causes of cancer, not just the treatment once the beast has started.
posted by theora55 at 9:40 AM on May 7, 2014 [4 favorites]

I didn't see him as being selfish. His wife had the information that her cancer was incurable, that any treatment she received was merely buying her more time, and neither Bach nor the oncologist hid that fact from her. Some people feel that fighting for every extra second is worth it, no matter the cost, and that is their right. I cannot imagine being in his shoes, and I certainly would try to distance myself from the role of physician in that situation as he seemed to do. She had a young child, perhaps that had something to do with her choice to pursue more aggressive treatment.

I'm sorry, this hits quite close to home as a young family friend (17 yrs old) passed away last week from testicular cancer after a valiant, yet futile struggle. Fuck cancer.
posted by notaninja at 9:55 AM on May 7, 2014 [1 favorite]

Yeah. i am struggling with this at this very moment. I am relatively young, was super fit and healthy as can be until one day in february when i noticed a lump where there shouldn't be a lump.
In 2 hrs i am going in for the last of 33 radiation treatments (i've had 7 weeks of chemo). Not once have my docs given me the straight talk i want. they shake their heads at how 'easily' i have 'skated' through the treatment (it has sucked and were it not for the fact that i was strong going in and have had tremendous support from family and friends i would be a trainwreck).
they say it is curative, but the numbers in all the literature still dont give me better than 50/50 odds at making it 5 yrs. I have a son who turns 10 next week.
so my struggle now is that if (or when) it comes back, and i know the odds then go to zero, how much of this suckage do I endure for a few more months with my family.
I can't taste food, I'm on pills for everything (after a lifetime of maybe taking an aleve once in a while after a weekend long ultimate tournament), but I still managed to work through most of it and now can try to recover.
Problem is i have some expertise in this realm, and have biopsied and diagnosed my share of this particular cancer. My docs know it but they still don't look me in the eye and give me the choice to just live it out rather than take the beat down.
So now I wait. wait for my taste buds to return, wait for my charred skin to recover, wait for my weight to come back and maybe my whiskers. wait for the next scan to see if they got it, then the scan after that to see if it's returned, then the scan after than and the scan after that.
I am going to choose to live life to the fullest. i am making plans, including becoming an expert on taste recovery. I am going to be the best dad i can be for as long as i have.
What else is there to do, even if it means lying to myself a little.
posted by OHenryPacey at 10:43 AM on May 7, 2014 [34 favorites]

The article quoted Paul Bowles, The Sheltering Sky - here's a longer excerpt:
Death is always on the way, but the fact that you don't know when it will arrive seems to take away from the finiteness of life. It's that terrible precision that we hate so much. But because we don't know, we get to think of life as an inexhaustible well. Yet everything happens a certain number of times, and a very small number, really. How many more times will you remember a certain afternoon of your childhood, some afternoon that's so deeply a part of your being that you can't even conceive of your life without it? Perhaps four or five times more. Perhaps not even. How many more times will you watch the full moon rise? Perhaps twenty. And yet it all seems limitless.
posted by zenon at 10:59 AM on May 7, 2014 [7 favorites]

OHenryPacey: Here's hoping you get those twenty.
posted by zenon at 11:05 AM on May 7, 2014 [7 favorites]

I'm having the damndest time finding it, but there was an article published in the last few years in something like the Atlantic/NYT/New York magazine universe that talked about the extraordinary measures an oncologist had taken in response to her own cancer diagnosis - despite previously making a name for herself advocating for palliative care/quality of life for her patients.

You can try and predict how you'll react, but you'll never really know until you cross that bridge.

As far as taking people to task for lack of straight talk - the hard truth is a lot of medical professionals simply do not have all the answers, or are poorly equipped to convey the answers they do have. And it can be even harder to have this kind of conversation among family members than with professionals.

Maybe if I take an extremely uncharitable reading of the piece, I can see selfish if I squint really hard - but end of the day I hope I can do as well as this guy did should the need arise.
posted by NoRelationToLea at 11:12 AM on May 7, 2014 [4 favorites]

I think this is it: Helping Patients Face Death, She Fought to Live
posted by Hlewagast at 11:33 AM on May 7, 2014

It turns out that Hollywood has grief and loss all wrong. The waves and spikes don’t arrive predictably in time or severity. It’s not an anniversary that brings the loss to mind, or someone else’s reminiscences, nor being in a restaurant where you once were together. It’s in the grocery aisle passing the romaine lettuce and recalling how your spouse learned to make Caesar salad, with garlic-soaked croutons, because it was the only salad you’d agree to eat.
Oh fuck, this. That's exactly it. Almost had a breakdown once in the produce section of my local supermarket because of this.
posted by MartinWisse at 1:25 PM on May 7, 2014 [9 favorites]

Absolutely gut wrenching.

I can't imagine being put off and lied to. All we can do is hope for a doctor that will be honest with us.
posted by BlueHorse at 3:22 PM on May 7, 2014

I put off reading this when posted, as I suspected it was going to hit too close to home (and it did). And yes, it was gut wrenching. Enough that I had to walk away half-way through the article and do something else for a while. Ruth's experience, as described by Peter, is eerily parallel to what my mother is going through right now (right up to the fractures in the spine) and the ways in which my parents (with decades of nursing experience between the two of them) hide the truth behind lots of medical jargon that occasionally stumps even us, who grew up listening to such terminology at the dinner table.

So I hear "METS" and assumed it is some sort of chemo related condition, only to receive clarification that it means "metastasized" and it might be happening, we don't know yet for sure, as we can't bring ourselves to trust the PET scans that couldn't find the source of the cancer the first damn time around. Time to see the neurologist and hope against hope that the newest fracture is the latest in a series caused by all the years spent on her feet, nursing in shitty shoes. Or from the chemo. Or anything but "METS".

But it probably is "METS" and my parents will continue to hide behind the medical jargon and my brothers and I will continue to know a better portion of the truth and we will all deal with the friendly intrusions from those who care to second guess my mother's decisions. Through all of this, I am thankful that my parents share with my brothers and me a language that conceals and reveals the awful truth.
posted by theBigRedKittyPurrs at 9:23 AM on May 11, 2014

I have metastatic breast cancer so Dr. Bach's article was difficult to read. I am "fortunate" tho, that my small volume of bone mets hasn't done much (and are not in a dangerous area of the spine as Ruth Bach's were).

I was diagnosed at age 43 and have lived with this disease for five years. I still work full time. So far I have had two drugs (both daily pills). One worked for two years and then I had slight progression. The other has now been working for three years. Eventually it will stop working and then it will be on to the next drug. People with bone-only disease can often do well--unfortunately that was not the case for Dr. Bach's wife.

I recalled the Bachs from a 2011 series of blog posts in the New York Times. The seven-part series started with “When the Doctor’s Wife Has Cancer” in February 2011 and concluded with April 2011′s “Back to Work and Life With a Fresh Perpective.” In the April 2011 installment, all seemed well–Ruth’s hair had grown back following the conclusion of her chemo. The piece ends with the couple enjoying a gorgeous day at the beach with their son, a happy ending to what had been a frightening chapter in their lives.

So how could this woman possibly have died a mere nine months later? Bach did not assign a time frame to his New York Times 2011 series–as many readers probably did, I assumed Bach was writing about events in real time, but that wasn’t the case. In his most recent article, we learn that Ruth was first diagnosed with breast cancer in 2008. So the New York Time series actually described events from three years prior.

Still, even with this timeline clarification, the news is no less incomprehensible. In June 2011, just a few a months after the publication of the NYT series–and three years from her first diagnosis–the Bachs learned Ruth had a metastatic recurrence. She died eight months later in January 2012.

My mom also died from metastatic breast cancer--she was 53. I did think it was curious Dr. Bach made no reference to his earlier series--especially since the NYT articles ended only a few month prior to his wife's metastatic recurrence.

When I read Dr. Bach’s most recent story, I felt a familiar blend of emotions: sympathy for Bach and his young son, anger that yet another young life was lost and despair that even people as smart and well-connected as the Bachs were powerless against this insidious disease.
posted by KOBKOBKOB at 2:54 PM on May 11, 2014

KOBKOBKOB may you continue to be fortunate- it's remains a very raw hand you've been dealt.

I tracked down the other pieces by Dr. Bach you referenced. The NYT tagged similar work with "The Doctor's Wife" and all of his writings with his name.

His rejoinder to an interns brief medical summary of his wife's medical history with "Well, Odysseus got on the boat, stopped a few places and then reunited with his wife" which simply demonstrates the value of a classical education.
posted by zenon at 8:56 AM on May 12, 2014

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