BROOKE: The language used by doctors, or by friends, can intensify the anguish of those unmoored by cancer, or left in its desolating wake.

 

WAGNER: Hi my name is Patricia Wagner. and I don't like the word cocktail, I don't like metastases, and I like unknown origin.

 

BROOKE: One of the most eloquent anatomists of cancer language is Susan Gubar, distinguished professor emeritus at Indiana University and author of “Memoir of a Debulked Woman,” about life with ovarian cancer.

 

GUBAR: Part of the problem of cancer language is that it can implicitly blame the patient. When the patient is said to relapse, the word relapse is historically related to relapsing back into sin. The word recurrence would be a better word choice. Oncologists frequently talk about a patient failing a drug or a procedure, when in fact the procedure or the drug has failed the patient. And I think another problem is just how incomprehensible scientific and research language has become. I"m thinking about simple things that nurses and doctors use all the time like ecog status. I was told i had anastomosis, I couldn't imagine what that was, even after I read the definitions on the web. It's almost impossible for most of us to understand what this language means. Of course the scientists and the researchers need it, there's no question. But sometimes you feel as a patient as if you're an immigrant in a foreign country where you just don't speak the language.

 

BROOKE: About Memoir of a Debulked Woman. I know debulking is what they had to do to you. Tell me about that word.

 

GUBAR: Debulking is one of those ugly words related to cancer. to me it's one of the ugliest. And it means the taking out of everything in the abdomen that you can in order to try to save the person, so it's a kind of evisceration. For me, the word debulking became a king of metaphor for the gutting of the entire world. Because it's followed by chemotherapy which takes the color out my world and took the spirit out of my body and turned me into what i felt was a posthumous person. I'm very grateful that right now I'm on a targeted drug, just 4 pills everyday. Because i think the traditional protocol for ovarian cancer debulks you of life with its excitements and its exuberance and its sense of pleasure. It takes a lot away.

 

BROOKE: I don't think there's any good word that you could find to replace debulking

 

GUBAR: Surgeons call it the mother of all surgeries.

 

BROOKE: Well that might be better?

 

GUBAR: it would be better - MOAS.

 

BROOKE: And you were saying some of the words needlessly cast blame it seemed on the patients - but even words that suggested things that were favorable sometimes contributed to this language of blame, right?

 

GUBAR: Yeah there is a topsy turvy sense to the whole universe of cancer, so if you get a positive result, it usually means something negative. If you have a brain scan and you're told that your brain is unremarkable that's probably great news but you would never know it.

 

BROOKE: And if the surgical scan is clean --

 

GUBAR: If it's clean you feel, "Oh my god, if and when the cancer comes back, i'm gonna be dirty." But there are also a lot of euphemisms. I've gotten scans back where people have talked about spots or shadows, and I really had no idea what they were talking about. They could have just said malignancy, but it's hard for these doctors: they're delivering pretty crummy news quite frequently, it must be terribly demoralizing. I'm less charitable when I am told that there are acceptable side effects. Because i just feel very strongly that a lot of the language about specifically the side effects of radiation and chemotherapy really does obfuscate.

 

BROOKE: Which is why you celebrate Dr. Susan Love - she's a famous oncologist - her depiction of what the treatment is.

 

GUBAR: Right well she very famously calls surgery, radiation, and chemotherapy "slash, burn, and poison." And, you know, that's basically how it does feel to many patients.

 

BROOKE: And then you said that there are issues that there are simply no words to adequately describe.

 

GUBAR: You know we don't have a word for the interminable waiting that cancer patients do. I was thinking "waitferno". Many people get doctors opinion that disagree. A man with prostate may be told wait and see, or he may be told try radiation, or he may told surgery. What do we do with these disagreeing second opinions. And there I came up with "double Doc'd"

 

BROOKE: oh that's good!

 

GUBAR: This is a place where patients need to be inventive, and some have been very inventive about creating new words.

 

BROOKE: Scanxiety.

 

GUBAR: Yeah, I love scanxiety. Every month I have  to get a blood test and every few months I have to get a CT scan, and scanxiety has to do with the heightened anxiety as the scan approaches. The other one I really love is by Professor Jane at Stanford: "Chemoflauge".

 

BROOKE: Misleading depictions of what the chemotherapy side effects are likely to be..

 

GUBAR: Exactly.

 

BROOKE: What about the word "previvor"?

 

GUBAR: Thats an interesting word that's come up among particularly people with BRCA 1 and 2 mutations.

 

BROOKE: The ones that bring with them a very high likelihood of breast cancer.

 

GUBAR: And also of ovarian cancer. They used to be called "carriers" which sort of sounds like they're carrying some kind of influenza or plague that other people could catch. So previvor was a way to explain that they survive pre, before, they get cancer  but very aware that they may get cancer.

 

BROOKE: That brings us to the word survivor. You don't like it, you've resisted it.

 

GUBAR: I really don't like the whole warfare language around cancer.you have to fight and struggle against it valiantly. It's extremely hard to fight against something that's inside your body and part of your body, and it makes you feel very schizophrenic. But i also really deeply feel that there are many people who are not going to survive cancer, and it makes them feel like they're duds. There's a whole cultural, positive thinking, get a good attitude and you will be able to vanquish cancer.

 

BROOKE: So you don't like the word, mostly because of its possible impact on those who know they aren't likely to survive.

 

GUBAR: Exactly.

 

BROOKE: What's the alternative.

 

GUBAR: My favorite is because you have to go to the hospital so much 'cancer schlepper', which my friend Nancy K miller came up with. Some of my readers in the New York Times blog, they suggested, PhD - patient hasn't died. I kind of like that. One of them came up with chemo sapien, cause she's always going to be on chemo. And so she's decided that's her self definition.

 

BROOKE: It sounds like in confronting the inadequacies of that lexicon, there can also be a lot of pleasure or even empowerment in reclaiming that language, reinventing it.

 

GUBAR: I think so. My best example of that would be the queer theorist Eve Kosofsky Sedgwick who wrote a series of columns for Ma'am. She came up with all sorts of crazy definitions like BBP: bald barfing person, you know. She also decided to define herself as 'undead' until that time when she has to be counted among the 'differently extant".

 

BROOKE: She's also responsible for QIBIFA - quite ill but inexplicably fat anyway.

 

GUBAR: Yeah, that's a great one. Wonderful. But I also just want to point out that patients are bombarded by really inadequate language very often from family and friends. "You look great" "you'll beat this' or "my grandmother had that kind of cancer" - someone actually said this to me,  - "and she died after four months". Somebody said to a friend of mine "your poor kids". I think the question "would you like to talk with me" and "do you want to define how we talk" is just all that's necessary. Setting up a framework so that the patient is the comfortable one.

 

BROOKE: And if there was any word that you would like to extirpate from this discussion would it be survivor?

 

GUBAR: I don't like extirpating words. This conversation about language and cancer really historically derives from Susan Sontag. Her book "illness as metaphor". And it's a brilliant book, it made a huge difference, it made cancer speakable when it came out in the 70s. It's a Draconian argument, it's a quixotic argument, because she's arguing that we shouldn't use metaphors. She wants to extirpate, to use your language, metaphors. She thinks that metaphors have made cancer even more difficult to bear. But we can't get rid of metaphors. We can no more get rid of metaphors that we can get rid of words.And i think it's particularly important for cancer because it's invisible. It can often not be smelled, touched or felt. So I would encourage people not to extirpate, but to create more metaphors, and more languages to explain your experiences.

 

BROOKE: Susan thank you very much.

 

GUBAR: Thank you.

 

BROOKE:  Susan Gubar is professor emeritus at Indiana University and author of “Memoir of a Debulked Woman,”

 

Suzie: Hi my name is Suzie and i'm calling from Oregon, i just got over having leukemia, and I just got back to work this week after doing a couple rounds of chemotherapy. I don't have any words that make me cringe, but I will tell you that my coworkers when they approach me and they tell me that they're glad I'm back, they won't say the c-word, like it's the other c-word. "Oh i heard you were out, you were in the hospital, weren't you?" and I say "oh yeah, i had cancer" and THEY cringe.

 

Now that increasingly, people live cancer out loud,  options abound, not just for treatment, but for how to frame the very idea of cancer.  Of course the stigma remains, not because it it will invariably kill you - it might not  -  but because it casts a chilly shadow. Not a death sentence, but really, a reminder. I mean we could frame life itself as a death sentence, right? We’re stuck on the track, and there’s a slow moving train coming that we can’t see.

Mention cancer, and bang! it jolts into view.

 

Next week,  Stories of Cancer...as told by Hollywood, Washington, and you and me.

 

CREDITS

On The Media is produced by Kimmie Regler, Alana Casanova-Burgess, and Kasia Mihaylovic - but this week (and next) the heavy lifting was done by OTM producer, Meara Sharma. We had more help from Jesse Brenneman. And our show was edited by…me. Our technical director is Jennifer Munson.  Our engineer this week was Greg Rippin.

 

Katya Rogers is our executive producer. Jim Schachter is WNYC’s Vice President for news. Bassist/composer Ben Allison wrote our theme. On the Media is produced by WNYC and distributed by NPR. Next week....

 

I’m Brooke Gladstone.