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The following is a lightly edited transcript of the May 15 episode of the “Say More” podcast.
Shirley Leung: Welcome to “Say More” from Boston Globe Opinion. I’m Shirley Leung. This is episode 3 of our series “The C-Word: Stories of Cancer.”
Today we start with a question: How far would you go to keep a secret for someone you love?
Would you risk their life? Support their lies until it was too late?
Barrett Rollins did that for his wife, Jane.
Jane hid her advanced breast cancer until she collapsed at work, unable to breathe. And here’s the wrinkle: They’re both world class oncologists.
Now, what would compel two cancer doctors to keep a secret like that?
The reasons are complex — and mystifying — and 10 years after Jane’s death, Barrett still wrestles with them.
Barrett and Jane worked together at the Dana-Farber Cancer Institute here in Boston. He recounts Jane’s tragic story in a recent book called “In Sickness: A Memoir.”
I asked Barrett the question that had been bugging me since I read the book: How? How did Jane hide her illness for so long?
Barrett Rollins: That’s the critical question, isn’t it? How could she have hidden something so prominent from her husband and from everybody else and from all the doctors that she worked with? I think it’s important to understand that this book is not just a book about cancer and somebody’s cancer journey, it’s also a book about a marriage.
Our marriage, which lasted for 30 years, was complicated. Maybe it was more complicated than some other marriages, but all marriages I think at some level are complicated. We had about 20 years of a really, really great marriage. And then all of a sudden, 20 years in, things changed.
Jane became a little more withdrawn, all intimacy stopped. After a while, it just became easier for me to sleep in another room, and I never really understood why. I had to make a decision: Do I stay with her? Do I object? Do I leave?
I was just completely in love with her. We had a wonderful relationship in every other domain, so I decided to stick it out. It’s a complicated story as you know from reading the book. About five years after that, Jane unwillingly revealed her diagnosis.
Leung: This is where she collapsed in the bathroom. Tell that story.
Rollins: We had a pretty set routine. We worked really hard during the week. I was still working on the weekends, but Jane just totally shut off on the weekends and she would spend most of the weekends in bed. We were in our own little bubble, very hermetic.
I was puttering around on a Saturday morning and I suddenly heard her call out from the bathroom and she said, “I need you.”
I knocked and came in and I was confronted with this sight of my wife lying on the floor of our bathroom. She was dressed in her usual Saturday outfit, which was a long caftan dress, sort of from her neck to her toes, but it had been slightly unzipped and underneath the caftan, on one shoulder, was a towel. I could see that the towel was beginning to be soaked in blood.
I said, “My God, what’s happening?” And Jane said, “I’m dying.” Very matter of fact, “I’m dying.”
And I said, “What are you talking about, you’re dying.” She said, “I have breast cancer. It’s starting to bleed and I’m dying.”
I said, “Well, you know, I gotta call 911,” and she said, “Don’t.” And I said “Don’t be ridiculous.” It ended up being a shouting match.
She ultimately said, “If you call 911, I will never forgive you and I will never speak to you again.”
Leung: She would rather die on the bathroom floor?
Rollins: Absolutely. And she made it clear.
Here’s where my accommodating personality accommodated. I sat down, she had brought the newspaper in with her. I said, “What do you want me to do?” She said, “Well, just read to me.”
I can still remember sitting on the toilet seat with her on the floor. I read most of the first section of the New York Times to her. How pathetic is that? This was while she’s telling me that she’s dying, but of course she wasn’t dying.
The bleeding stopped after about 30 to 45 minutes. She checked the wound. She saw she wasn’t bleeding, and said, “Okay, everything’s fine. You can go now.” I said, “Well, I can’t go now. We have to talk about this.”
“We’re never gonna talk about this.” That’s what she said. And again, “If you bring this up, I will leave you and I will never forgive you.”
So for the next four or five years, I was complicit in her desire to hide what was going on. I was complicit to the extent that I could convince myself there was no problem. I really kind of believed that everything was fine until another medical emergency, about five years after that, revealed her disease to the world.
Leung: You spend so much of the book wrestling with Jane’s actions and decisions, and you write that denial is too simple of an explanation. Can you talk a little bit about why you think Jane didn’t want anyone to know she was sick?
Rollins: One thing is, on the sort of personal level for Jane, she had a phobia about medicine.
In all the years we were together, I never saw her go to the dentist. She never had a mammogram. She never had a colonoscopy. She never had a primary care physician. There was something in her that was phobic about medicine.
There are just ironies upon ironies here, right? Because she decided to go into medicine. And not just anything, she goes into cancer medicine.
Leung: And Dana-Farber is known for its research for finding medicines, to cure cancer or treat cancer.
Rollins: Absolutely. Not only that, but for screening and prevention, all the other things. She’s a first responder that runs to the fire. She runs into the building. There was something in her makeup that made her want to do that, probably because she was disappointed in herself because of her phobia. So that’s one thing, put that in one category.
The other thing that Jane recognized, which you may resonate with, is that when somebody gets a diagnosis of cancer, all of a sudden it’s like flipping a switch. People treat that person differently.
Leung: Yep.
Rollins: There’s this patronizing, “Oh, are you okay? What can I do for you?”
It was very important for Jane to be seen as strong. She saw that when people at Harvard Medical School are perceived as weak, they lose all their advantages. And she was really worried that everyone’s attitude would change if anybody knew she had cancer.
And then there’s this other thing about people with cancer. They’re told, not so much by their physicians, but they’re told by society in general, now that you have cancer, your job is to be a fighter. You have to fight this thing, fight it day and night. And fighters are winners.
There’s an aspect of that that is absolutely wonderful. But what Jane objected to, was it creates a false situation in which the person with cancer, because they’re now fighters, believe they have agency. And they really don’t.
But if they believe they have agency over this because they’re fighting, and then through no fault of theirs, their treatment doesn’t work or the cancer that goes away comes back, what’s the implication? The implication is you’ve lost the fight. You’re a loser, you didn’t fight hard enough. Which is very, very destructive.
I think cancer patients have agency to the extent that they can make choices about whether or not they’re gonna get treatment. And in that respect, Jane retained agency, I think she used it incorrectly, but she retained it.
And then the final thing is, and I wish it was all about this because this last thing is actually rational whereas I think most of what Jane did was irrational, Jane’s research helped to establish the notion that people, not just patients with cancer, care more about the quality of their life than the quantity of their life.
Over and over again when you survey people, they care about how they’re living. They would trade length for quality over and over again.
Even in the last year of her life, while she was bed-bound and unable to do anything, she published a really important paper in the New England Journal of Medicine about this.
At that time, 10 or 12 years ago, metastatic breast cancer was not curable. She knew she couldn’t be cured and she knew just how toxic chemotherapy was in those days. It’s one of the reasons she stopped seeing patients very soon after her training was over.
Her patients loved her, and she loved taking care of patients. But this notion that she was going to make somebody deathly ill by writing an order in a chart, she couldn’t stand that. She didn’t want that for herself. Now that was the most rational thing, but all these other things were also there too, and they were pretty irrational.
Leung: When reading the book, I got really mad, at first at Jane and then I got mad at you, really mad at you. Jane collapses, you don’t call 911 then you just slowly let her die of breast cancer. How did you do that? How did that happen?
Through the process of writing this book, you must have thought about that, right? I don’t know if you’ve thought about how that happened. You wouldn’t advise anyone to do that?
Rollins: Oh my God, no. You know, you are just the latest in a long line of people who’ve said they’re really mad at me. I’ve sort of struggled to understand that, because it’s complicated. I wrote this book and I hadn’t decided to publish it right away, but I just felt it was important to write it so that I could try to understand a little bit better what had happened.
But then as I struggled with whether or not to publish it, I began to feel incredibly guilty about even thinking that because here’s Jane who spent a decade hiding everything and what right did I have to display it all? It just felt like an incredible betrayal. So I was already mad at myself, but not for the reasons you were mad at me.
It took me a while to understand that other people were mad at me because I didn’t act the way…
Leung: You had a responsibility.
Rollins: I absolutely did. I had a duty to act, as her husband.
Leung: And you’re a doctor.
Rollins: Thanks. Can we get some of the reporters to come in and pile on?
But you’re right, you’re absolutely right. And this is what I still feel incredibly terrible about. I haven’t resolved this, other than to understand it is in my nature to be accommodating. Not just accommodating for my own good, but I really thought I understood what it took to make this endlessly fascinating, charismatic woman, happy. I had spent decades doing that already.
Another way to think about my duty, is my duty was to make her as happy as I could. In a convoluted way, allowing her to die on her own terms, made her happy. So, that’s another way to think about this. I was fulfilling that responsibility.
Leung: Right, I did come around. It was like an emotional rollercoaster. First I was mad at Jane, then I was really mad at you. But in the end, it’s Jane’s life, it was her choice. So I was less mad at you at the end because, right, it was her choice.
I also felt like your book laid bare that she made the wrong choice.
Rollins: She did.
I have talked to people who are, let’s say, in the Robert F. Kennedy Jr. camp, and I’ve heard somebody say, “This Harvard cancer doctor decided not to get treatment, so nobody should get treatment.”
I actually did have a conversation with one person about this and said, “That’s nuts. My book shows you that it was the wrong decision.”
Leung: That’s what I took away. If you do what Jane did, then you’ll suffer more than you have to. She could still be alive today given the advance in medicine.
Rollins: That’s possible. At the very least, her life would not have been so miserable. I write in some detail about what it took every single day to do the dressing changes; it was so complicated. It was like the invasion of Normandy, every day.
She was miserable because this thing was bleeding. It got infected. It smelled bad. If she had gotten treatment, that probably wouldn’t have happened.
Leung: So how unusual are “Janes” in the world of oncology? The patients who are in denial and refuse treatment.
Rollins: It’s not that uncommon.
All of us in oncology have, in the back of our minds, a small cadre of patients that we saw who would come in with long, neglected cancers of various sorts because of fear or their own phobias. Once the book was written, I started getting comments and emails from people saying, “Thank you for writing this. It reminds me of when my mother did the same thing, or reminds me of when my cousin did the same thing.”
There is a large population of people out there who are doing this, and I think it’s one of the deficiencies that we as oncologists have lived with. We need to think more about how to reach out to people who don’t want to be seen and think that their treatment is gonna be worse than their disease.
There will be people who are stubborn and delusional like Jane who thought the treatment was worse than her disease, but I’m here to tell you it really wasn’t. There are other people who I think can be convinced, if we do it the right way.
Leung: So do you think people are more scared of cancer than other diseases and that’s why they put off treatment?
Rollins: I do.
I think it’s pretty clear that people are scared of cancer.
Leung: And why is it so scary?
Rollins: Well, I think there are a couple reasons. One is a historical reason. People are scared of what they don’t understand.
If you think about Tuberculosis, for example, this was a disease that was the staple of European literature for a couple centuries. If you think about what happens, people just suddenly start losing weight. They become listless. It’s kind of just tailor-made for some kind of romantic story in which Tuberculosis is a visitation for some sin this person committed either in this life or a previous life.
It wasn’t until the discovery of the bacteria that causes Tuberculosis that you had a rational way to think about it. So nobody talks about this anymore.
Cancer was the same sort of thing. For centuries, nobody knew what caused cancer. It was this mystery, also of visitation, and it was organ specific. There are all sorts of myths that you can come up with about why someone might have developed cancer. We had no treatment and, again, for which we didn’t understand the origin.
That is really changing now with discoveries that really show what the cause is, treatments that are directed at that cause, but that’s gonna take a while.
But I think the other thing that’s unique about cancer is the way it distorts the organs that it involves. It directly impacts bodily autonomy. As we go through the world, I think that we imagine ourselves as intact entities that interact with other people. Cancer attacks that intactness. It creates lumps in your breast, it creates broken bones, it creates a stroke-like syndrome if you have brain cancer. There are things that it does that destroy the sort of compactness and wholeness of the body, and I think that’s fundamentally terrifying to people.
I think a lot of people who either have cancer or have a certain turn of mind, can be scared to death that’s gonna happen to them.
Leung: You studied medicine for decades before you encountered this experience with Jane. You write in the book about changing the dressings on her chest. It was really difficult for you to be on the other side, to be the caretaker and to be so vulnerable to a disease.
How did that experience change your perspective as a doctor?
Rollins: The whole experience changed my perspective, but I’m thinking particularly about treating Jane’s tumor.
I think your listeners who haven’t read the book need to know that the right side of Jane’s chest was completely replaced by this football-sized mass. It was misshapen, parts of it were dying. It turned black. Other parts were infected and there were parts that were bleeding all the time.
These kinds of things always bothered me, even when I was in medical school.
Leung: Squeamish to blood?
Rollins: Not to blood, not to blood. This is very specific. Blood didn’t bother me and people who were very sick didn’t bother me, but there was something about big tumors that were decaying and destroying somebody’s body that made me sort of reach for the rails because I was afraid I was gonna faint.
The first time I saw this was the day Jane had this event. When we were at Dana-Farber, we always had lunch together. We were on our way to lunch and she just collapsed. She’d had a huge clot, traveled from her legs up into her lungs. When we got to the emergency room, they took off her clothes and there was this thing which I had never seen before. I sort of looked at it from a distance and I thought, “Oh, this is what she’s talking about.”
My insight into this is that people can ultimately handle anything. There’s nothing special about me. I took care of her for a year. I helped the visiting nurses change the dressings for a year. I think people should take heart in knowing that I, a kind of neurotic otherwise normal guy, could eventually step up and do all this stuff when necessary.
And I think people are doubting their ability to do that. It should take some strength from the fact that I could do it and other people do it all the time. We should provide support for them, but people are strong enough to do this.
Leung: Also, it was an incredible act of love, a final act of love to take care of her the way you did at the end.
Rollins: I think there’s another lesson here. It’s a negative lesson.
Jane and I had this hermetic relationship. Jane, she kept her family at a distance. There’s all kinds of psychodynamic stuff going on there, but she had a sister and a brother and a mother that she just, long before she got sick, kept at a distance.
Leung: She didn’t even tell them for a long time that she had cancer.
Rollins: No, she forbade me to tell them. She kept my daughter at a distance. We didn’t have many friends.
I can’t speak for her, but from my experience, her last year would’ve been very different if I had family support. So there’s another negative lesson, don’t try to do this by yourself.
Leung: That was one of the things that is so memorable from my cancer journey. Once I told other people and family that I had cancer, I had this incredible outpouring of support.
You didn’t experience that during the time Jane had cancer. But, I had meals, I had the newsroom put up a collection meal train. People came over and babysat my kids for me. My mom flew in from California and took care of me and did the laundry and helped me change my dressings.
Rollins: That’s so great. So that’s the way it should be, right?
Leung: Yes, that’s the way it should be. Now when I know other people have cancer, I pay it forward. I pay it back. I then provide the meals and support. It’s actually this incredible experience.
You feel incredibly human and alive. It’s amazing. I feel bad you didn’t get to experience that because if there’s a silver lining to cancer, it’s to see humanity come out.
Rollins: I totally agree.
Once you can blow past the patronizing stuff we talked about earlier, what you get is really authentic and caring support. It is this sort of silver lining. If you have to go through this, and you know we are all doomed to go through something, there’s that aspect of it that you can look for.
Leung: What do you want people to take away from reading your memoir about Jane’s story?
Rollins: Well first, I don’t want them to be so mad at me. That’s selfish, I know.
Leung: I’m not mad at you anymore.
Rollins: Okay. Okay. No, I think there are a couple things. One is that people are infinitely diverse. Everybody’s different. Everybody’s response to what may seem like a common disease is going to be different. We as physicians and also as family members, I hate to use this phrase, have to sort of meet people where they are.
I think Jane is an extreme example of this. If I had been more skillful, I might have been able to let her have the autonomy she was seeking, but in a way that didn’t make her life worse. So I think that’s one lesson.
Another lesson is that we are capable of helping. Don’t believe that you’re not strong enough to take on something that seems to be horrific. I couldn’t have had a nightmare worse than what I had seen when Jane finally collapsed. Yet, we got through that. We had a final year.
I think those are the main things. And then the last thing is we should also be thinking about those who have survived the deaths of the people they loved. Those survivors have been touched very deeply. They’re not the same people they were before this happened.
This was really one of the reasons that I ended up publishing this book at all. I felt very guilty about revealing Jane’s secret. I talked to Jane’s sister, who as it turns out, is an author, and I gave her a copy of the book. She said she was mad at me, but then she said she liked it.
I said, “Well, can I publish this? It just doesn’t seem right to be able to do this.” And what she said I think was really important.
She said, “For a long time, this was Jane’s story. But now it’s your story and you can do whatever you want with your story.”
Leung: Barrett Rollins is a professor of medicine at Harvard Medical School and a longtime cancer researcher. His book is called “In Sickness: A Memoir.” He also has a new book called “First the Patient,” about another fascinating medical story.
Listen to more “Say More” episodes at globe.com/saymore and wherever you get your podcasts. If you like the show, please follow us and leave us a review. You can email us at [email protected].
Kara Mihm of the Globe staff contributed to this report.
