NEAL CONAN, HOST:
This is TALK OF THE NATION. I'm Neal Conan in Washington. If you don't recognize the cause represented by the teal ribbon; if you've never attended a fundraiser for ovarian cancer research, signed up for a run or a walk-a-thon, it may be because, as Susan Gubar writes in her new book, most women diagnosed with ovarian cancer don't live long enough to become activists, fundraisers, educators about their disease.
Susan Gubar got her diagnosis nearly four years ago. The cancer had already spread through her abdomen. To slow the disease, she underwent what some doctors call the mother of all surgeries: She was debulked. Her ovaries, uterus, fallopian tubes, parts of her intestine were all removed. In her memoir, she details with brutal honesty the pain, treatments, changes and disasters that followed.
If this is your story, give us a call, 800-989-8255. Email us, firstname.lastname@example.org. You can also join the conversation on our website. That's at npr.org; click on TALK OF THE NATION. Later in the program, Chicago Tribune reporter Bonnie Miller Rubin on a message from her former self. But first, enduring ovarian cancer. Susan Gubar joins us now from member station WFIU in Bloomington, Indiana, where she's professor emeritus of English at Indiana University; co-author of "The Madwoman in the Attic"; and her latest book is "Memoir of a Debulked Woman." It's good to have you with us today.
SUSAN GUBAR: Thank you very much.
CONAN: And I guess - how are you doing?
GUBAR: I'm doing well. I'm in a remission, I'm happy to say.
CONAN: I have to ask you, when you got this diagnosis, back - November 5, 2008, one day after the election, you describe lying on a gurney in a hospital hallway and feeling a sense of relief.
GUBAR: Well, I had been troubled, you know, by seeing how debilitating old age is in my mother, and I had suffered as a child when my father committed suicide at the age of 56; I was 15. So I thought, well, I'm in my 60s. Better me than my children. And I'll deal with this. You know, I know many people who have cancer, and I figured I would deal with it.
CONAN: And you determined on a course of action - among other things, saying: I'm not going to go off and just do treatment just for the sake of treatments, if they're not getting anywhere.
GUBAR: Right, I felt strongly then that I wanted to do what I could to sort of save the preciousness of life. But I felt I would not go beyond that. I did not want to extend life at the expense of the quality of life.
CONAN: Because you understood that a diagnosis of advanced ovarian cancer - well, the prognosis simply isn't good, is it?
GUBAR: Well, I understood that the prognosis for the 23,000 American women who are diagnosed every year is very poor. I didn't know then that 70 percent of those women would die within a few years of diagnosis.
CONAN: In fact, you're four years out - on the outside of the survival rates.
GUBAR: Well yes, I am.
CONAN: The determination not to undergo life-extending operations - well, did you manage to keep that up?
GUBAR: No, I did not. I found myself changing. As my end grew closer, it seemed more distant. I felt that I did have to keep on taking chemotherapy, to try to beat the disease - although I believe it is unbeatable, given the current protocols of medicine. We're still - I feel as if the treatments are, in a sense - even with wonderful doctors; and I had excellent surgeons, and excellent oncologists - I think the treatments are very debilitating. The protocols extend life, but they also harm and hurt lives.
CONAN: You use the word - in fact - barbaric.
GUBAR: Yes, yes.
CONAN: Is that too strong a word?
GUBAR: I don't mean this as a criticism of my excellent physicians, who are extremely well-meaning. But I call it locanocology(ph) in the book because there's a way in which the physicians and the patients face a Catch-22. That is, the cancer is going to kill the woman - ovarian cancer is lethal - and it's sort of a little bit like paranoia's dream come true. I mean, there's something in there that's trying to kill you. And you don't know what it is, and you can't imagine it, and you can't visualize it, and you can't see it.
On the other hand, the treatments are very debilitating for this particular disease. Part of the biggest problem with this disease is the lack of a detection tool, so that many women are diagnosed - most of the women who are diagnosed, are diagnosed in stage 3 or 4. So if there were a detection tool, if there was research put into finding a detection tool, as well as for better treatments, American women - women all over the world would be much better off.
CONAN: And that brings us to a question you return to, again and again, in the book. Were you listening to what's called the silent killer? Were you in a state of denial, pretending that those gastric problems, those intestinal problems were something else?
GUBAR: I think that is definitely true of me. But I do want to say that I've read many, many books about other women - there aren't many books; I shouldn't put it that way. I've read the few books I could find by women who have self-published or published, you know, memoirs about their cancer.
And with ovarian cancer, the signs are very subtle. They're very muted, and they're easily misunderstood - not only by doctors but by the patient herself, because many women experience fatigue or bloating or indigestion, and these are just symptoms you put up with. You feel you don't want to whine about them. And they're often misdiagnosed as irritable bowel syndrome; or possibly as menopausal or depression or hernia.
So I think it is easy to sort of not register these signs, to not really - to hear them as the noise of the midlife body, and not to really understand what they signify. But yes, in my case, I think I simply repressed it.
(SOUNDBITE OF LAUGHTER)
CONAN: Well, OK then.
GUBAR: I have to admit that.
CONAN: You thought you had irritable bowel syndrome.
GUBAR: Yes, I did. I was convinced that if I did a lot of stretching and yoga and breathing, and I ate the proper foods and enough fiber - and some prune juice, maybe - all would be well, and all manner of things would be well.
CONAN: You are also defying the sort of cultural place that we've put cancer - I know you say you're confused yourself; victims, survivors, whatever the term is - that you must always fight the disease, you must never give in to the - what you seem to have accepted as the fact that you're going to die with ovarian cancer.
GUBAR: Yes. I think that some of this idea that you have to be fighting the disease till the very end makes people feel culpable for being discouraged, and for knowing at a certain point that the quality of their life will be hurt by the treatments that might extend their life. And I think we have to be more sensitive to people's decisions. They're very personal decisions, and they're very difficult to make.
CONAN: I wanted to read you this email that we got from Hayley(ph) in Portland: I'm 38 and underwent a hysterectomy for ovarian cancer eight months ago. My ovaries and uterus have been removed. What are some of the most surprising things you learned about the cultural perceptions about womanhood, as a feminist, after undergoing your debulking surgery? I, myself, never planned on having kids, but I still heard socking comments about how my surgery was not a big deal since I was never going to use my uterus anyway. I am still reeling from such comments.
GUBAR: Well, I think that's really - I really feel for this person because it is a big deal. Debulking - which tries to take out as much cancerous material, and all the organs that have been affected by it, as possible - often leaves visible and invisible seeds of cancer in the body. Most debulking operations in America actually are called sub-optimal, which means that there is some visible evidence of cancer left in the body, and that means it will recur. So this is a devastating diagnosis.
CONAN: It is also one of those moments - you write in the book that patients, before surgery, normally have conversations with their surgeons about what's going to happen, and what's going to happen afterwards. Debulking - you don't know what's going to happen.
GUBAR: And it's really not malevolence on the part of the surgeons. I mean, they don't know. The tests don't tell them what's happened inside the body. And even scans, even CT scans sometimes are completely inaccurate, in terms of what's going on inside the body. So until they slit the body open - excuse my explicit language - from the belly button to the pubic bone, they don't really know what they're going to find, and what they're going to have to do.
CONAN: And therefore, they decide after they've taken a look.
GUBAR: Right, which means that the woman has no volition or agency, and no decision-making role in this. She's anesthetized at that point.
CONAN: There was - you write of some nostalgia, I guess, for previous procedures called peek and shriek.
(SOUNDBITE OF LAUGHTER)
GUBAR: Yeah, that's what they used to do in the old days. They would open up a woman and if the cancer was very bad, they would just stitch her up again. And they called it peek and shriek.
CONAN: Which was, I guess, a resolution of sorts, but...
CONAN: Why is it that this disease has not - treatments and, as you say, detection for this disease, have not improved so much over the past - what, 20, 30 years?
GUBAR: I think one of the problems is, it doesn't receive enough federal funding. It's been historically underfunded. It turns out that in the past 20 years, no new drugs have been approved by the FDA for ovarian cancer. This is the not the case with other forms of cancer. So more money has to be put in there.
I think also because it's 23,000 women, American woman a year, it's not a lucrative pharmaceutical adventure for drug companies. So they have been tentative in their response to ovarian cancer.
CONAN: In fact, you write that there has been one - at least one drug that has been developed, but it's on hold.
GUBAR: Yes, many drugs are on hold and have not been approved by the FDA.
CONAN: Isn't that always somehow the case, though - that whatever it is you've got, there's something coming down the pipeline, but not in time?
GUBAR: Not in time, right, right. But when you think that so little has improved, statistically, since the '70s; and you compare it, for example, to treatment of prostate cancer or breast cancer; it's clear that something needs to be done. Gilda Radner was very young when she was stricken with this disease, and not much has changed since then.
CONAN: Susan Gubar is our guest; she's the author of "Memoir of a Debulked Woman: Enduring Ovarian Cancer." If this is your story, give us a call, 800-989-8255. Email us, email@example.com. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
(SOUNDBITE OF MUSIC)
CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. Susan Gubar describes, in her new book, her reaction to the news after her diagnosis with advanced ovarian cancer: The resolute acceptance tangled with dismay, snarled with depression - she writes - as I descended into deeper circles of an inferno in which I suffered less from the disease, more from grotesque surgeries and procedures performed by the most enlightened and proficient practitioners of contemporary medicine.
Enduring ovarian cancer mires patients in treatments more patently hideous than the symptoms originally produced by the disease, while ovarian cancer itself endures - as it has for centuries - unchecked in any significant way by the new findings of contemporary science.
Surely at this point, I should have been ready to relinquish the proactive advice of physicians, bow to the consequences of the incurable nature of the disease, and embrace my imminent fate - of course, she didn't - early on felt a sudden sense of relief.
You can read more about that in an excerpt from "Memoir of a Debulked Woman" at our webpage. Go to npr.org. Click on TALK OF THE NATION. If this is also your story, give us a call, 800-989-8255. Email firstname.lastname@example.org. We'll start with Ruth(ph), and Ruth's on the line with us from Franklin, Tennessee.
RUTH: Hi, how are you all?
CONAN: Good, thanks.
RUTH: I wanted to say, I went through a lot of that horrible surgery. They kept doing surgery like, a year after I had my original surgery but - because they kept finding other things. But I had all of that done nine years ago. So I was able to get through it.
GUBAR: That's fantastic. I'm - I congratulate you. I think that's wonderful.
RUTH: Well, thank you. So it was important for me to hear from people while I was going through it, other people who had survived it and made it through to the other side. I wanted people to know that you can get through it.
GUBAR: I think you're making a very important point. And there are ovarian cancer listservs, where women write to each other while they're in treatment. And some of these women have had five and six and seven recurrences, and yet they manage to continue living their lives. This is - it's amazing, the kind of courage that some women are capable of.
CONAN: Ruth, what's been the effect on your life, and your family?
RUTH: Well, it kind of tore my family apart, going through all of this. You know, I ended up getting divorced after everything was over with. You know, we had a son. He was 2. He and I are very, very close. He can still remember - even though he was 2 - he remembers me going through all of that. He remembers me not having any hair and not being able to pick him up. But he called my bald head the ball - you know, he always wanted to play with the ball.
(SOUNDBITE OF LAUGHTER)
GUBAR: Again, I think you're making a very important point, which is that cancer doesn't just hit the patient. It's a really tough burden for partners, and for children. I think there's no question that it's - the fallout, the consequences for the entire family can be catastrophic.
RUTH: Yeah, it really can.
CONAN: Ruth, continued good luck; thanks very much for the call.
RUTH: Thank you so much.
CONAN: Let's see if we can go next to - this is Ann(ph), Ann with us from Portland.
ANN: Hi, Neal, yeah, I am facing this situation right now. It's not ovarian cancer. I have bladder cancer; was diagnosed in December, had a biopsy, an operation done in January - the 11th, had chemo afterwards and just last Friday, went back for another checkup and was told that the cancer is back. And most likely, will be - is cancerous, and this is just - I'm not getting the result until tomorrow, but she - the doctor told me yeah, she's pretty sure.
And I'm facing exactly those questions that your author is writing about, and I'm going to get her book because I really do not want to go through this. This was only four and a half weeks ago, and do I have to do this every five months? I'm not prepared. I am 75 years old, and my thing is quantity over - no, quality over quantity. So I'm really, really right now - in the throes of some depression, of course.
GUBAR: Oh, it's a very difficult problem. There are women who continue to exist with what they call maintenance therapy; that is, they know they're going to be on chemotherapy for the rest of their lives.
ANN: I'm not going to do that.
GUBAR: But there are quite a few women who just feel that the quality of life is so limited and curtailed by the chemotherapy, that the toxins are so debilitating, that they just cannot do that. And they won't do it.
ANN: Mm-hmm. That's my stance right now. No, it's very difficult to face.
GUBAR: Very difficult.
CONAN: So is the alternative.
GUBAR: Yes, exactly. That's the problem.
ANN: Well, I - like I said, this is just very - so very recent, and I basically was not surprised by what the doctor told me. But it still comes as a shock, and what do I do now?
GUBAR: Yeah, I think it will depend so much on the kind of chemicals they're going to prescribe and your - you know, your reaction to them. There have been - there has been some headway in relieving side-effects of some chemos. So perhaps they can come up with a protocol that you can take. Perhaps not. It's a very complicated decision, and I feel for you.
ANN: Thank you.
CONAN: Thank you. Good luck, Ann.
ANN: Thank you.
CONAN: And Susan Gubar, I have to say - after reading your book - I'm not sure that there are treatments that make the chemo more acceptable.
GUBAR: Well, I have to say, I took this anti-nausea drug that was just fantastic. I never threw up once. And I'm sure that 10 or 15 years ago, I would have thrown up every day. So I think they have made some strides. Everybody has a different reaction to the toxins that they're - the toxic chemicals they're given, and everybody is given a different kind of cocktail - we should not call it.
I found that with the first chemo that I discuss in the book, that the symptoms that were most difficult for me were psychological rather than physical; which is that I felt as if my subjectivity had been evacuated. I had no self. I wasn't me. I wasn't Susan. I wasn't, you know, the kind of partner I feel I want to be, the kind of mother I want to be, the kind of teacher, the kind of mentor or friend.
I just felt like a kind of zombie. And those were psychological consequences that not everybody suffers, but that I did encounter.
CONAN: This from Catherine(ph): I'm one of the 23,000 and currently undergoing a second round of chemo for a recurrence. I'm game for this round, but I wonder how many more I'm good for. Treatment is no walk in the park.
GUBAR: That's perfectly put.
CONAN: Yeah. This from Teddy(ph) in Modesto: I've lost a close friend and my mother-in-law to ovarian cancer. Both were put off for more than a year by the same physician. They'd gone in complaining of pain and discomfort and - was put off many times before they finally put their foot down and insisted he run some tests. By that time, it was too late.
GUBAR: You know, what interests me about that email is that very often, I will meet people who will say to me: My mother or my grandmother or my, you know, my sister had this disease. And yet it's one of the world's best-kept secrets. There's so little written about it. I had a lot of trouble finding the few memoirs that - the self-published or out-of-print. And I think part of the problem is that the story is not a happy - a happily-ever-after story.
I mean, it's hard to read a story that's not going to have a good ending. It's hard to write a story like that. I also think that the stories ovarian cancer patients have to tell address taboo subjects. They deal with bowel problems and blockages, and it's difficult. It's very difficult to overcome one's modesty or reticence with just sense of decorum, and address these issues.
CONAN: And how - it's got to be uncomfortable writing a book that exposes all of those...
GUBAR: It's terribly - it's terribly uncomfortable.
(SOUNDBITE OF LAUGHTER)
GUBAR: The only thing...
CONAN: Perfect strangers are going to know all this stuff.
GUBAR: It's grotesque, actually.
CONAN: Let me ask you another question, though, which is sort of a professional writers' question: As you lay on that gurney, one of the things you asked yourself was, you know, maybe I have come to the end of my professional accomplishments. I've written the books that I've wanted to write - you wrote a pioneering book I mentioned, "The Madwoman in the Attic"; you've edited anthologies of women's literature; you wrote a biography of Judas Iscariot - but were having a hard time coming up with a new project.
GUBAR: No, that's true. And I think that, you know, I dealt with this the way I've been trained to deal as a scholar with anything that happens in my life. And I started reading. And I started finding out how little first-person accounts there were, how few memoirs there were, and how difficult it was to understand the scientific work that was being published.
And it became a project. And it was - writing the book was, in a sense - this is an answer to something implicit in your earlier question; how can I stand, you know, revealing these things about myself, this sort of self-exposure - but writing the book was a kind of lifeline for me. Working on sentences and paragraphs, and thinking about the poems that came to my mind that helped me to express what I was feeling, or the paintings by Frida Kahlo - that, for me, was - I don't think I could have survived without writing the book.
CONAN: Let's go next to Keith, and Keith is with us from Gainesville.
KEITH: I lost my mom to ovarian cancer in 2010. Your bravery in discussing this is refreshing. As family members, we had to make those hard decisions. My mother was a 40-year nurse. She was 71 when she was diagnosed. She had wonderful team of physicians. I'm in an academic research community - we have all the technology and specialists you could want, and more, here.
She had no symptoms. We had no idea until finally, she got so ill and had a mass, and she had to have the debulking surgery, which - she was not a large woman. She was, at her peak, 105 pounds, and she was 89 pounds at the end of her surgery. But then we had to make - her only request - as a nurse - was, I don't want to die in the hospital. And she'd also been a hospice nurse.
KEITH: That year of treatment, as difficult as it was, she - and she tolerated most things well - it gave all of us as family members all kinds of opportunities. And she found strength - she was a very strong woman, but she found even more strengths, strengths she didn't know she had. When she washed her hair, my brother, who is a fine-art photographer, took these beautiful pictures of her slick, domed head and her huge smile, with her two grandchildren - my sons.
We still miss her greatly. It was an incredibly brave decision on her part. And as a family, she kept saying, just let me go. I don't want to burden you. And all we could say is, there's no burden that they can put you through that we can't handle together as a family. And would - you know, looking back, would I say, gee, I don't want her to go through all that suffering, I'd rather just lose her a year earlier? Absolutely not...
GUBAR: Right, right.
KEITH: ...because I know that that's not what she'd have wanted, either. And I'd love to thank my surgeons, but I can't say their names on the air. But - or her surgeons.
GUBAR: I want to say that the experience of your mom - about not having any symptoms at all - is something that I have read about with a number of other women who have this disease, which is one of the reasons why it's so important to get some kind of a detection device. The CA-125 blood test does not work for many women. It produces false positives. And many women have absolutely no signals from their body that there is this mortal threat.
KEITH: And she was well aware of her body, and took good care of herself as a nurse...
GUBAR: Exactly. Exactly.
KEITH: And there was just nothing there until it went out of control and her CA-125 went off the scale. But everything was off the scale, at that point.
CONAN: Keith, thanks very much. We're talking with Susan Gubar, author of "Memoir of a Debulked Woman: Enduring Ovarian Cancer." You're listening to TALK OF THE NATION from NPR News.
Ayanti(ph) is on the line, with us from Santa Rosa.
AYANTI: Hi, Susan.
AYANTI: I wanted to first of all, thank you so much for writing about this. I'm an ovarian cancer survivor. I was diagnosed almost to the exact time you were. What I wanted to ask you is - and I'm alive because I was very fortunate to go to a surgical oncologist the first go-round. I had no symptoms.
What I have run into is, you are saying - yeah, I'm so glad that you wrote this memoir. However, my concern is this: 30 years ago, breast cancer - women were terrified. Nobody would talk about it because women died. Right now, nobody wants to talk about ovarian cancer. And I'm worried at the end of this show, everybody is going to put their heads in the sand because the stats are so terrifying. (technical difficulty) And I feel like you're expected to not live.
How do we give - and so I'm saying, I'm giving ovarian cancer survivors hope. You can survive this. However, we need everything that you've been saying - federal funding; we need more attention. How do we do this? I'm finding it so difficult. It's a very difficult road. So what advice - how do we get the attention paid so that women don't have to go through this? I don't want anyone to have to go through what I went through, or what you went through.
GUBAR: I completely agree. I think you will - I'm listening to your voice and the cadences of your voice, and I think you will find your way to make a difference. I mean, I think we all have to do it in a different way. There are women who are working for various ovarian cancer alliances. There are people working - there are many oncologists, you know, applying for research grants. There are - and now - I mean, I tried to - write this book. I'm sure you'll find your way. But I think we do have to make the disease speakable.
CONAN: Here's an email from Jay in Ann Arbor: My wife went through ovarian cancer in 1995. Her story is one of serendipity. She listened to her body, asked her aerobics instructor to work on abs because of her bloating. Fortunately, that instructor had just been to a seminar where she heard this was a symptom of ovarian cancer. Luckily, an OB-GYN came to the class. My wife asked her about it. Three days later, she was diagnosed with ovarian cancer. One week after that, she had surgery - again, luckily, stage 1 cancer. She still went through six months of very difficult chemo. She's been cancer-free ever since.
GUBAR: I am really glad that you read that because I think it's very important not to frighten women. Ovarian cancer can be cured if it is found in stage 1. It can be cured. This is - it's extraordinary. Unfortunately, 70 percent of the people who have it are in stage 3 or 4. But it is something that if we were to find a detection tool, could be cured.
CONAN: This, from Scott in Denver: As a former student of Susan's, now in my mid-50s, I remain impressed with Susan's intelligence, wit and grace throughout life. My very best wishes.
But I wanted to end with this email from Julie in St. Louis: I've dragged my feet on making my women's health appointment. I'm a mother with a business. Your guest scared me into picking up the phone and making my very overdue appointment. If you have symptoms similar to what your guest has talked about, what can a person do? What test is there to ask for? Where can we go to get more educated?
GUBAR: Well, I think you can ask for the CA-125 test. It's just that it's not a solution for all women. It does track, for some women, the existence of cancer. And there are other various scanning devices that can be used and - that she can find on any webpage at a major hospital site.
CONAN: She could do worse than read "Memoir of a Debulked Woman," too, by Susan Gubar. Thank you very much for your time today, and we appreciate your coming on to talk about a very difficult subject.
GUBAR: Thank you very much for inviting me.
CONAN: Susan Gubar joined us from member station WFIU in Bloomington, Indiana. She's professor emeritus of English at Indiana University, Bloomington. Up next: Bonnie Miller Rubin, once to introduced as Davenport, Iowa's first gal sports reporter. She recently stumbled on that 1973 article. She joins us next. If you've come across a message from an earlier self and time, give us a call: 800-989-8255. Email us: email@example.com. Stay with us. TALK OF THE NATION from NPR News.
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