Elizabeth Benedict — Rewriting Illness - with Deborah Tannen

okay good afternoon everyone welcome to I'll take some pros I'm I'm Brad Graham I'm the co-owner of the bookstore along with my wife Melissa Muscatine and we're very pleased to be hosting Elizabeth Benedict who's here to talk about her new book rewriting illness uh Liz is an accomplished author with five previous novels over the past four decades and a non-fiction work widely used in writing programs entitled The Joy of writing sex she also has edited three anthologies and taught writing at several universities and she's made a practice of coaching high school students on their college application essays now rewriting illness is a is a deeply moving and you know given the subject matter actually quite surprisingly entertaining in many places a memoir about her own battle with cancer which began after she suddenly discovered a lump in her armpit late one night in 2017. Liz brings not just the writers a crisp style and sense of detail and description to recounting going through something that she and really many of the rest of us have feared but she also tells her story with a with a good deal of humor and and self-awareness and succeeds in making her very personal story a universal one One reviewer in the Boston Globe said Liz is writing sparkles and says goes on to say that her book may actually help readers feel better about our own natural fears even while it confronts the worst now in conversation with Liz this afternoon will be Deborah Tannen a Linguistics professor at Georgetown University and of course herself an author of many books including the now classic you you just don't understand and most recently finding my father uh Deborah also has published poems short stories and and personal essays I just want to add I think this is still true is Elizabeth's editor out in the audience somewhere no okay well she is okay great okay well I've been I've been also asked to note that the book was co-published by Mandel Villar press and dryad press right so uh please join me in welcoming Liz Benedict and Deborah Tanner [Applause] oh hi everyone thank you for coming um so many people in this audience that I have known for such a long time I might start to cry but I'm going to try to resist um it's really great to be here I was I lived around the corner down the street when politics and Pros opened I think in 1984 and it was across the street and it was about as big as this little area and so I I had the privilege of talking about each of my books at at politics and pro so I'm really happy to be back here and I was one of the last times I was here was was with Susan stamberg who was a contributor to a book an anthology I did called what my mother gave me and we we had a wonderful event here and Deborah and I Deborah was in another Anthology about why women are so obsessed with their hair and we were at another politics and prose event together with murder Golden's here Marita golden who who wrote a wonderful essay called my black hair that I've that has gone around a lot and is a very important essay on on women and hair anyway so uh by the way thank you I guess I'm just saying thank you for for inviting us to come today it really means a lot to me and and I actually have to say exactly the same thing um when politics proposed his way across the street they actually did an event and it was not you just didn't understand it was the book before that called that's not what I meant which you've never heard of but that makes sense all the more meaningful that uh we had that event there and I too can say every book's in so thank you uh yeah and thank you for inviting me to do this conversation with you um I guess we both have now written memoirs although it's not we were not memoirists a kind of um I think it is category of writers um so maybe maybe you could start by saying something about writing a memoir after all the many other books and many other types of books that you've written okay uh interesting question um I started out writing novels uh as a way of telling stories that that meant something to me but which I think I had to disguise and when I wrote my first novel came out in 1985 it was before the age of memoir and so I I took relationships and feelings that were very intense and that I wanted to kind of examine and I gave them to characters I made up and in 2023 you don't have to do that anymore you can just let it rip you can just talk about you know your husband and your parents and your best friend and your former best friend and it's a very different atmosphere um but I I wrote a lot of memoiristic essays over the years uh but I I had no plans to write a memoir and then I got cancer and and then I had no plans to write a cancer Memoir because I I think the world has seen a lot if not too many cancer Memoirs and I knew that it would be a challenge to try to write something that hadn't been said before and so one of the challenges for the book was how to write a cancer Memoir that is a little different but it took many many drafts to do that and the first draft that and so I I guess I was a reluctant memoirist very reluctant and one of the early titles was The Reluctant Memoir it's not a great title um but I wrote many drafts and sent one that I thought was as good as I could make it at the time to a few friends and one of them said I don't think anyone but your friends are going to want to read this and I said okay all right thanks um and I and then covet happened and uh so I thought really no one is gonna even my friends will not want to read it now and um so I put the book away for three or four months and then I went back to it and was puttering along and I didn't quite know I didn't have any great idea for how to revise it but uh I just kept poking away the way writers do and I many months later spoke to a friend as writer and editor and he asked me about the book and I told him and he said how long is it and I said 250 pages and he said no one with cancer wants to read a book that long and then he said um he asked me what the title was and I said the girl who died and he said that's a terrible title no you need a better title than that and then he said um how long are the chapters and I said well you know the usual 10 pages 20 Pages he said no much too long and he said I'm writing a book now where no chapter is more than 900 words which is about three pages so I thought okay this is A New Perspective and I hung up the phone or threw it across the room or whatever we do with phones now and I rewrote the book completely and so the book that you read which I know all of you will read um or if you haven't already read it um is is that book is this book with these little chapters and I so I people say how did you do that well I think I printed the book out and then I started with a pen pencil circling passages that told the story and then the passages that were not about the story that were my observations about other things and so I could go from uh so the book was a bit of a collage it became a bit of a collage but but running through it is the cancer story so it is a cancerous Memoir in terms of the narrative but there are all these other little sections that have to do with fear and have to do with women and hypochondria with my past with and and the book starts with a story well anyway I'm going to read a little bit from the beginning how's that so people get a flavor but but I do want to put say that it works beautifully the and into a very clever titles for each section as well and so it's kind of like potato chips you absolutely want another one thank you Deborah well one thing that happened when I started writing these very short chapters these funny titles emerged and they it was just like um one of them is called not everything scares the out of me um that's uh one of them is what the doctor said and then the next one is what the other doctor said um and and then what I wanted to say to the doctor is the next one so the the type these funny titles they just kind of started happening and it then the book became sort of this entertaining quality that people have talked about because it was sort of funny um they were like kind of like I was yelling at myself or I was yelling at the universe or I was like what the doctor said and then what the other doctor said and so it was kind of like Billboards that I was writing to the world um and one of the um and one of there are a lot of characters in the book and um one of the things that happened to me was it took three months to be diagnosed because I got this ridiculous series of doctors and nurse practitioners and other doctors who just kept dropping the ball and making mistakes and telling me I was too anxious and not just giving me a biopsy which they should have done right away so that's kind of why that became the story of the book is sort of why this took so long it was not a rare kind of cancer that I needed to be studied by the top doctors in the universe I mean it was like really simple um and it took many months to get diagnosed but in the in the early stages I was full of anxiety not surprisingly and um my sister okay well I'll read this this chapter is called Nam Yoho renge Kyo try chanting implored my sister Nancy my only sister my only sibling it's great for anxiety please I was worried about cancer and she was worried about my anxiety Tibetan chanting has helped her through all kinds of spiritual and psychic crises places where Psychotherapy doesn't go it was that simple she explained and you just say it over and over until calm descends on you like soft rain try it she said I'll send you chanting beads in a booklet I cut but I'd come to the city myself she lives in New Jersey but I have friends who live near you and they'll come in a Flash and chance with you it's very soothing because whatever is wrong with you the anxiety is not helping I think I'll pass I said but thank you or maybe I didn't say thank you I was distracted the truth was that even in what felt like my darkest hour to date I still had no team spirit equality or anti-quality I'd identified with debt decades before while reading Muriel Sparks novel the prime of Miss Jean Brody Florence Nightingale Miss Brody opined to her high school girls had no team spirit nor did Helen of Troy Cleopatra or the Queen of England I was no more interested in chanting with people I didn't know than I had been enjoying the brownies or the Girl Scouts as a kid in being on a sports team or going to work in an office every day and the problem the actual problem was not my anxiety despite my reluctance when Nancy came to visit me she said let's chant now now I looked from her to her husband to James all of us sitting quietly in the living room the Specter of my having cancer the only subject on any of our minds repeat after me Nancy said and closed her eyes and intoned yet over and over until the rest of us got the hang of it and followed along stumbling some but chanting the two sisters and the two husbands willing as people are when the backdrop of good health goes dark to do just about anything that might allay our fears and recast the storyline we must have chanted the phrase and who knew or cared what it meant 30 or 40 times before I realized that it was having no effect on me I cracked open my eyes and was touched to see everyone else eyes closed burbling these syllables and to see my sister across the living room her hands delicately on her thighs leading us but where she looked peaceful but determined and I understood that this was about calming her nerves as much as mine maybe more than mine it gave her something to do besides worry that I might die but it wasn't having the same effect on me a short time later James and I visited her for the weekend and the first thing she did was take me to her friend's house for more chanting in the vast Suburban living room was an elaborate Buddhist altar the size of a home entertainment center that briefly made me ashamed of my skepticism this worked for them why not me I hadn't wanted to be a girl scout when I was eight but I didn't need to be churlish now did I I would give it another chance until I heard we would be there for an hour I quietly told Nancy I wouldn't last I was open to this but only to let's call it drive by chanting 15 minutes on the outside and even that I tried to give myself over to it the voices The rhythms Nancy's kindness and her friends the enveloping altar while I marveled at Nancy's discipline and her singing of another Tibetan chant that was five or six dense pages of syllables that changed from Line to Line and that she chanted without a hiccup back in the city when the weekend was over she phoned to see how I was doing the same I said I was a chanting flop not quite a chanting denier but just impervious to its charms and wonders so so even when you have cancer things can be really funny it didn't seem funny at the time but but rewriting but there was a PS to that oh yes because the chanting does end up being useful yes and so of course I was a chanting you know a skeptic but there were certain moments like when I was getting a bone marrow biopsy which is you don't ever want one of those this needle that's going into your your pelvic bone or your whatever some bone and I started chanting quietly while I cried in pain and then another time something terrible was happening like another painful thing and I started chanting so I still don't know what it means but but it became part of my brain and it can be useful and it can be useful for certain things in limited limited situations um in a funny way the book isn't really about cancer it's about what for one thing there's very little talk about the actual cancer treatment it's finding the diagnosis that drama and then the drama after um but could you say something about fear because you start with fear the first sentence is fear is inventive and you end with a discussion of fear and really fascinating um because there's so much doctor frustration you know you want to as reading it you want to throttle the doctors but you end up really thinking about the doctor's fear and the role that they played so maybe say something about that well the the uh a friend of mine read the book when it was uh that was almost published and said he thought the title should be the noise of fear um I was a hypochondriac and some of that came from being in a very small High School class of 22 girls one of whom got lymphoma and died when we were seniors and she got sick one day and then like she was dead two months later and I and it was a tiny little class and um and that kind of re rearranged my nervous system and so I think until then you know I maybe had medium fear you know normal fear and then it just went like so whenever I got a bump of any kind I was really really nervous um and I figured whatever happened to this girl in my class could happen to me because why why not you know it happened to her um so I was extremely hypochondriacal and I I found this lump in my arm and I literally went to the doctor within 12 hours and I was extremely diligent about doing everything people wanted me to do so I was very good patient but um but my level of fear was just off the charts and and so I spent a lot of time while I was writing the book um thinking about fear thinking about women in fear thinking about my own hypochondria and also my own fear of flying which I think is a kind of hypochondria and uh after having cancer and then doing chemo which was quite a profound experience I I didn't really think I was ever going to get better because you're so debilitated by it but when I got better I started going on trips and going flying places and I my fear of flying had gone away it was very strange um and I I probably should stop talking about it because it might come back but but it still has gone away and it's been five years so um I and I I spend some time thinking about sort of where it went how did it like what was the mechanism for it going away or um and I'm still not quite sure what it is but I Susan Sontag said that after she had her first cancer treatments uh in 1975 she said I felt gleaming with survivorship and she felt a kind of euphoria and I think that I think having survived she had a much more serious Advanced cancer than I had but I think going through that uh and I ended up in the hospital for six days getting chemo and and I was on the chemo award and had experiences that were really really foreign to me um and that were very very dire I mean for other people in in around me as well as for me um and so I guess I felt sort of gleaming with survivorship and so I felt sturdier afterwards I mean I felt less fragile than I had because I I saw that even when you have chemo and you know you can't move that you're you actually might get better you know it was it was kind of a revelation um I don't recommend it you know for if you're flying but but but you know it it but it is one of those turning points so anyway fear um so I guess I'm a little less fearful um but I I also think it's hard not to be fearful I mean particularly if you're a woman I mean you're supposed to touch your breasts every month to make sure you don't have cancer it's not like we're making this up right we got to get tests every year to make sure we don't have cancer so and it's very prevalent so you know we have to be somewhat fearful I mean it's good to be somewhat fearful yeah I mean I thought there was a certain um literary Beauty to ending with the fear of the doctors and starting with I don't mean hours that we are afraid of doctors but doctors should be afraid but doctors fear and yeah it's it's so easy to be angry at doctors because they there's so much misdiagnosis so much yeah attributing anxiety when it's clearly something wrong um but so I was very moved by your the effort you put into understanding the doctors and and and and connecting it to the fear so maybe just two words about that um I didn't write the stuff about the doctors until very late in the process very very late it was almost one of the last things I added and I I guess I felt like I had been like I I I read Otto gawande's book on mortality and saw how little training doctors have in talking to patients about death and dying and that's a lot what his book is about and about how he reoriented himself and how he used some of those um new tools when his father died and um so I I saw how little training doctors have I did go to a psychiatrist who said when I was complaining to him and I said all these doctors said to me I don't think you have cancer and the psychiatrist said well Liz you know how hard it is for doctors to give people bad news like I was like oh my God I can't believe we're having this conversation I can't believe he said that to me um but I did think about it and and if you see how little training they have it's um I I think they need to get better at it but um but I did end up feeling some sympathy or some understanding of why they're so bad at it or why many of them are so bad at it now I do think that once you get to an oncologist oncologist this is the the they're they they have a little more practice in this than your GP you know um that's what they're there that's their business um and so I think they might be somewhat better at this but um but doctor training is really quite uh lacking in um talking to people about death and dying um you're mentioning 200 psychiatrist reminds me of something else that I liked so much about the book there's a lot of attention to language and um playful and insightful comments about that uh so you comment how words take on different meanings when people say are you seeing someone it means are you seeing a psychiatrist because you're going to need it in this context um and just a funny little thing I don't know how many of you heard the expression for the birds I mean you talk about how that came back to you and you remembered your mother using that and suddenly I heard my mother that's what she's that was her phrase when she disapproved of something this that's lovely things and I'm going to ask you about one that I particularly liked you comment that the metaphor of a journey and the metaphor of a battle are the most common metaphors for cancer and and and you found more um revealing the coast of Maine can you explain that is a Linguistics Professor so this is my final exam here the multiple choice question or do I have to write it yes I can maybe the only one will ever ask you that question but I thought it was wonderful that cancer is like the coast of Maine okay can't you remember yeah you did but I do I do I I think I remember that um well so so in pop in popular lingo we we have cancer Journeys and everybody's like oh and somebody said to me well you're at the beginning of your cancer Journey like oh God please don't you know anything but my cancer Journey um but it's a nicer way of saying your battle with cancer it has a slightly more hopeful um possibilities than your battle but um so I I found that cancer is so it's such a complicated uh illness and it has so many meanings in all of our Lives um you can have cancer in any part of your body you can have it at any age it's not sort of confined to a certain group at a certain time so it has many many layers of meanings for people and the cancer treatment has changed so much and the outcomes are so much better and there's some kind a few kinds of cancer that are now considered curable I mean it it's an enormously it's huge umbrella of a word now and but we still associate it with you know with death and dying and sometimes it's not but so one of the things I was trying to do was was to think about these different meanings and these different reverberations in in in my life and in say Susan sontag's work um and the coast of Maine is they I don't think they can actually measure the the distance of it because it has so many wiggles and curves it's it's just possible and so it seemed like cancer was kind of like that you know you'd say one thing and you could also say the opposite and or you could say something and and it it might change the next year because they'd find a breakthrough and that kind of cancer is now curable so it's a very it's it's this word that that terrifies all of us but it has huge reverberations and meaning right now fortunately right because um there's a lot of amazing uh treatments and remedies but it it's like a huge stone that you throw you that drops into the water and it ripples it ripples in all kinds of directions right to the coast of Maine I just let that metaphor yeah the battle is I think particularly I wrote a book called the argument culture about our tendency to turn everything into a battle and a fight and I was gonna have a chapter on medicine but in the end I didn't but I do think if um if you think of it as a fight in your hair people say things like I'm a fighter which kind of influences how you think about it and um maybe makes you think you're gonna either win or lose and maybe that's not the best way to frame it anyway I like that I thought that was great um one more thing that you comment that you decided not to tell a lot of people and I know that that's unusual you mentioned Nora Efron had done that as well um including close friends and I guess again this is something I've written about um close friends really don't like learning that there was a secret that there was something important that they weren't told and you even quote that something caught you out your eye that Frank Rich had written uh went because he thought he was really good friends with Efren and she hadn't told him and it made him question the Friendship um I thought we were good friends maybe she didn't so I just wondered about that decision and also well now I guess your friends all know um if they read the book they buy the book just whether just how you handled that and whether the with the conversations difficult when you did talk about it with them yeah it's a tricky question um my first inclination was just to not tell anybody you know not to just keep it a secret and uh and I've CL I talked to the few people that I was close to every day you know those kinds of really close friends and family of course but uh and and then I I there were a larger group of people that I I talked to that people I'm in touch with more regularly um but and then it became the only people I wanted to talk to were people who had cancer already and I thought about going joining a support group because you sort of think oh that's the cancer protocol you join a support group and then I thought I don't want to be in a group of people who were sick or who's sicker than I am or who talk about their illness all the time or who want to say well what do you have what do you have and what do I have and it's like that was the last thing I wanted to do um but the only people I did want to talk to were people who'd had cancer already and who survived and so if you were one of those people I called you if you weren't and then but the other thing is writing the book and Publishing the book and telling people about events I'm having a lot of people have said to me I had cancer you know and they didn't tell me so I think cancer is it's changed a lot you know all of these people whom I'm telling you know I had cancer they say oh yeah I had cancer too so it's much more common than uh but the survival is is much more common than it's been and that's really an amazing development in the world from 10 years ago 20 years ago certainly longer ago than that so um so uh there's somebody here who who called me who I see several times a year and she called me and she said I'm going to be in New York next week can you have dinner and I was like I don't think so I I'm just I'm at chemo and I can't move um if you if you weren't one of those people then I might not have told you unless you had cancer in in which case I would have called you and started crying so it was very um and a very close friend read the book and she said I I wish I'd known that you were sick because I would have comforted you and I was like oh and I I thought about calling her like 50 times and I never called her so it was it's a very hard thing to do to call up people and say I have cancer and but it's behind me and I think one of the reasons it it's such when when you know your friend has cancer you want to hear everything you want to hear how did it start when did you know is this going to happen to me if it happens to me how will I know what to do you know and so you have to tell the whole story you can't just say I have cancer but I'm fine now that's not the kind of story it is so I didn't want to keep telling that story and that was it was really difficult to to to to to decide I mean I just couldn't keep doing that and particularly when it was somewhat behind me I wasn't sure how I had two years when when you get monitored very closely to see if it comes back so for two years I didn't know whether it was going to come back and what what kind of story I had was I going to be a Survivor or was I going to be somebody who kept having cancer you know and you just don't know those things when you're going through it so if I called some of those people within that two years I would have felt like saying well I had this thing and it happened it hasn't come back but it might and you know it was there was it's a lot to explain and it's a lot to to to burden people with when they might not there when there might not be a reason for it uh yeah so many things come up with respect to that and the book I read about women friends was I was my title for it was why didn't you tell me because that came up so often and when people told me about frustrations or conflicts it often was not having been told something but the issue of what do we what are the French who said I could have comforted you another section I had there was people I had taught to who had had cancer and all the not helpful things that people had said because we don't always know what to say and we try and it isn't always right so so it's just an I think um a dilemma then you handle it so well and was there any Fallout I mean the company were the conversations you had after um I don't know significant in terms of the relationship or any no I think people have been understanding um I did I did have a conversation with someone who who said now there when I when I was sick and before I had treatment and she said well there as I understand it there are two kinds of lymphoma there's a good kind and then there's one that's what much worse which one do you have and I said I have the one that's much worse so it's very and I did I mean I had the one that was not that did not have an automatic cure on it I'm fine now I just want to say I am fine now but you know there there is one particular kind of uh lymphoma that that is considered curable um but I didn't have that one now I I'm essentially I don't want to say cured I don't no one's ever said that but I'm fine now um but uh there hasn't been a Fallout and when I've told people after not telling them I I try to make them understand that it was very hard for me to talk about and that was why I didn't talk about it it wasn't that I didn't care about them or I didn't it was just that I it was just too complicated and also didn't know how I was going to fare over a period of time so I I didn't want to you know I think you explained beautifully the the reasons for not and the downside of that all the questions and and there would have been more um ill chosen comments I only have one more question and then we'll take questions from the audience uh you do have a little discussion of the things that people have said cause lymphoma Jackie Onassis for example felt it was the hair dye and you mentioned dental floss and I want to ask you where do you find organic dental floss at a natural food store near you um I I don't I don't dental floss does not cause lymphoma um and and hair dye there's a big discussion uh I I mentioned hair dye because I dyed my hair for many years and if you look up hair dye in cancer you can read a lot about this subject and there's a lot of conflicting studies on hair dye and cancer so and I won't go into all of it but but it does not get picked up in the media you will be surprised to hear why because of hair products that are advertised and nobody wants to promote this subject um and a friend of mine that I I met when I did the hair Anthology that Deborah and Rita are in um wrote a book called true Roots about the dangers of hair dye and it was the toughest cell in the world I mean I put something on Facebook and like no comments I like I am in denial about this I'm going to stay in denial um but if you and and just to um hair relaxers which black women use have much more incidence of cancer than hair dye it's it's pretty just just Google these things you'll see that there's a ton of ton of information um but I I don't know that hair dye causes lymphoma but when Jackie Onassis died at the age of 63 of lymphoma she felt perhaps because doctors told her this I don't know that hair black hair dye had contributed to this hair dye changed a lot in the 1980s and 90s the the prop the chemistry of it and Hair beauty parlor workers or hair salon workers have very high incidences of cancer because they consume all this they they breed this stuff all the time but Jackie O did feel that her black hair dye might have contributed to her lymphoma and somebody told me that there were Rumors in New York that people were in Beauty parlors people were saying you know no no more black hair dye I don't I don't there it's very hard to trace this stuff but if you're interested you can Google it and they're really there are conflicting reports about this and one of the things that and you they the American Cancer Society has information on their website about it um the darker your hair dye and the more more permanent and the longer you use it the more toxic it can be and I don't think I think that doesn't mean it leads to cancer but that is everybody understands that okay um I mean that's not that's not controversial but the the other things may be uh controversial um but nobody wants to give up hair dye right it's like you give up cigarettes before in alcohol before you give up hair dye right during the pandemic lots of people did yeah yeah yeah and and we're happier for it right um so maybe we should open it to questions and it is important that you come to the microphones there's one on this side and one other side please yeah hi um I miss most of the talk unfortunately and I was wondering uh I lost my father at age 74. we didn't know what was going on but my mother noticed that he was getting large around the waist midsection and he had been active mostly if I play golf and she's like okay what's going on and finally after several doctor's visits they wanted to admitted him to try to do some exploratory tests so during the prepping for the tests the anesthetic wasn't fully active and whatever instrument they were they were using it he felt it and he had this horrible reaction so they had to sedate him uh heavily sedate him to you know stop the procedure or figure out if they were going to continue and so after long story short after they drained some of the fluid off of his abdomen they just the old world and I'm an old science person so they just said squamous cells of undisclosed origin and I was just wondering in after your talking to other people had you been approached by men or you know did the situation with men you know how did that factor in with um you're deciding to write the book or you know what you talk about when you do public talk my the situation with men in what I'm not sure what you mean well you said the situation with men no so so my father but what was your question what was your question had had I been approached by yeah men and and what their situations Oh you mean did men have a different experience of being sick this way than I had is that what you mean like didn't mean or did you just have men contacting you to tell their story while you were telling your story okay no no I I didn't no and I don't have any comparisons and but you know I maybe some will come out of the book and and you know but I appreciate your your interest yeah Tim Liz I I'd like to ask you and the distinguished linguist what is it about the word cancer there are many other terrible diseases in the world but somehow that one word strikes particular Terror in art when I was young we didn't say the word no one said the word cancer it was The Big C yeah well I um I guess for so long it it there were no treatments there were no I mean there were very few treatments and the treatments there there were were brutal I mean there were surgeries there were um very primitive chemotherapies that just laid people out and I one of the people I talk about in the book who was close friend had breast cancer in the 1980s and she had 1980s style chemo and radiation and she had scars all over her body from from radiation so the to the extent there were treatments they were extremely um let's say heavy-handed but extremely brutal on the body and so for for most of time most of history cancer has meant death and uh so I think and you know and it's now changing um and I but I think it's it's somebody told me there are 300 kinds of breast cancer I I can't vouch for that but I was told that there are 60 or 80 kinds of lymphoma um you know they're they're they're so many different kinds of cancer and you know some are rare and some are common and some have cures and some don't I mean so it's a huge huge word and huge um a huge number of it I guess it contains a huge number of conditions and and situations that um can get a that it's very hard to treat I mean people devote their lives to to working on cancer treatment I know some of them and you know what they they say I'm not I'm going to do this until the day I die I'm going to work on this until the day I die so it it has meant you know yeah until recently and now it's it's really begun to change and it's quite incredible no I think that's certainly Drew and I think maybe maybe each society and each time has some disease that captures the concept of our mortality and our fear I mean you talk about how so your your classmate dying gave you a fear of lumps I mean she didn't die of breast cancer but um and connected to her if you're flying so I think it's it comes to represent that I'm thinking that it's probably like tuberculosis was in Europe way back there are so many novels and stories you know Thomas mine you cough you see the blood and you know it's a death sentence although not everybody died but you knew there was a pretty good chance you would so I think cancer is our tuberculosis in that way thank you hi you mentioned that uh chanting didn't seem to help you very much or support you what what really got you through it in if you can explain that maybe what got me through it yeah just just endurance and she will and you know you have a problem I mean I had a medical problem and I I went through the treatment I mean I I just I would I guess what got me through is this was my life this was all I had um I mean I so um what I meant was kind of the supports okay and your husband and my husband my darling husband um but also my uh my my stepdaughter my friends um and friends who looked looked after looked into the in on me and people who would call every few days and say how are you doing um and uh um I read I I sort of picked out books carefully to read one of the books I read was a book that uh Dr Jerome groupman wrote called about Hope um I can't remember the title of it but but here was Dr grootman at Beth Israel Harvard hospital and he wrote a book about Hope and how hope can be helpful in dealing even with cancer um I think he was a little surprised that he wrote it um but I I needed some hope so I read his book um and then I I I so I I picked out books that I thought I could handle emotionally um and I guess I picked out books that were had hope hopeful um hopeful messages of some kind um one book I'm not sure when I read this but I read Jenny diski's book called in gratitude and she was an English writer who was given a terminal diagnosis of lung cancer and she wrote a series of essays as this was happening in the London review of books that was were gathered into a book called ingratitude and they were very funny and so reading that really helped me because she and I think it gave me the courage to to to do things that were sort of funny um and you know I think when you're facing uh humor we use humor when we're anxious and when we're fearful and we you know we there are lots of jokes about marriage right and about sex and about politics and things that make us afraid and things that where the stakes are very high and where we feel a lot of anxiety we just we we uh discharge some of that anxiety in humor um so I guess humor got me through um and uh my husband and my my family thanks um so I'm just curious as you speak about being through it and you feel finished with it um do you think you would have written the book if you had more recurrence and or was it because it was this outcome that you were able to do the book that's one and the other is just because I haven't read the book um and the one I remember reading was illness is metaphor and I suppose you refer to it but I'm just curious how that do you relate to that book or mention that book in this I'm curious about that as well yeah I talk about that book a lot and I talk about I talk about Susan sontag's book about metaphor and whether the metaphors have changed since she had cancer in 1975. so that's one thing I talk about I also talk about her life and one of the early things I talked about was that I read this decades ago that when she first found she had cancer she slept with the lights on and that was the first thing I thought of am I going to sleep with the lights on um so you know she was this uh incredible intellect examining metaphor and Illness but then she was this woman who slept with the lights on when she had cancer so you know she was very there was something very personal and intimate about that about how vulnerable she was and I connected with that um so I do talk about her her and her book a lot um your first question um I I of course I don't know what uh what I would have written I I probably I think if I had found the lump and gone to the doctor and been diagnosed and treated right away I would not have written a book because a lot of the book and a lot of my being forced to think about all these things happened because I had so much time and so many obstacles that came to me in the process of finding out what was wrong and getting treated so I had a lot of stories to tell um and I think the book might would have been different if if I'd had if there were a different outcome for sure yeah I'm not sure what it was but what it would have been but and I hope I hope I don't have to find that one out anytime soon but but thank you for asking it is striking how many of the people you went to seem to just not want to deal with it um oh it's probably nothing um well you could do this for your anxiety what is your thoughts what are your thoughts about it now why so many doctors didn't take it seriously right at the beginning well it was diagnosed initially but based on a sonogram as a an enlarged swollen lymph node but it was mismeasured which I found out six weeks later when all these people so so people you know the initial reading and this was a place that I where I'd gotten mammograms for years and so they mismeasured it and um but then it was just oh well you have these other various other issues so let's deal with them I I still don't understand it um maybe people just thought she'll eventually go to a doctor who'll figure this out um uh I I don't know I truly don't know um but I get colleges when you finally got to an oncologist because of your own initiative he seemed to know instantly oh yeah I mean oncologists are in a different category from your GP who says go go look at this and go look at that I mean it's it's a completely different world and once I got to once I had a diagnosis and got to an oncologist which I did all on my own um things were better but it was very much do it yourself medicine it was like this is happening and then go to this doctor and see about this I I truly don't know but I think it was that that it was mismeasured and then that my my nurse practitioner refused to give me a a prescription to get a biopsy and she wanted to do another round of tests and I I don't know what it was I I it's mystifying but it was really bad medicine and uh I I obviously don't go to that doctor anymore um and I when I was finally diagnosed somebody from the doctor's office called and I said I I don't want to talk to anybody here you know but I'd already tried to get another doctor and I couldn't get another doctor try getting another doctor I mean it's not exactly like you can just go to the grocery store and get something off the shelf I mean it's really hard it's quite striking you actually you had a lot of good contacts and you knew someone who had influenced a slum Kettering he offered to get you um an appointment but even they couldn't see you for months and then you know no that's not quite right but but the the hospital where I was diagnosed and where I had been a patient for two months they diagnosed me the guy gave me the pathology report he said this is what you have call our director of lymphoma treatment I call him as soon as I got home and they said the next appointment is in two months and I said you must be joking and the person that did finally was the knight in shining armor it was by chance right A friend had mentioned her mother had had this doctor and you looked him up and I called his office after the guy told me it was two months call this man's office cold called and his secretary said okay honey he'll call you tonight he called me at 6 20 that night talk to me for half an hour and he said I'll call you tomorrow here's my cell phone number and he was the leading lymphoma doctor in the world I just happened to get to him he he was and he was about to retire and the Very fact that somebody answered the phone immediately no menu gnome yeah yeah so it was a lot of it was just a I had to write a book about all this stuff somebody else have a question I was wondering if in any way you uh um grateful for what you've learned going through this oh yes absolutely yes I'm grateful every minute of every day no truly I mean you learn a lot yeah you go through it yeah and um and I suppose you know when I was sick and not knowing what was going to happen I wanted to talk to people who who'd had cancer because I knew that they would know that that they would know something like they would know you know that they'd have that gratitude and also they'd just be examples of people who survived and I I needed to hear those stories or even did did it change the way you approached living I go on more airplanes now and I get to go I get to go to more good places and that's really fun um and how you were going to approach it I I am dealing with cancer and I think what I have found is that the heart of part of my focus is on going through this gracefully and with courage and I have said to some people the hardest part is finding the plan once you have a plan for dealing with this it is much easier to face the process of treatment so well there are a lot there are a lot of places uh online where there are forums and on Instagram there are lots of cancer sites and people share their stories in in ways that I think are really great and I I sometimes I mean I try to participate in those and just offer support to people when when I'm there and so there are a lot of and there are forums and there are there are a lot of resources that there weren't 10 20 years ago for for getting support yeah I hope you find people I I just am grateful for it's opened my eyes to enjoying today and tomorrow and how many other days yeah yes indeed thank you yeah you do actually write that one of the people who spoke to said you're going to learn a lot and you were skeptical but at the end you felt you had no I know I wasn't skeptical I was like okay what am I going to learn like I was looking around all the time like it did is that it was that it you know because I think she meant something very she meant something you're going to learn something serious and interesting because she was my cancer Guru and she had been a 40-year survivor of breast cancer having been treated in 1980 so that was not insubstantial so she was very wise no more questions I think it's time and um thank you thank you thank you very much

Channel: Politics and Prose

Views: 1,044

Keywords: books, book, politics and prose, bookstore, author, author talk, author video, book talk, new books, book store, indie bookstore, independent bookstore, book tube, booktube, reading vlog, annotating books, book annotations, reading vlogs, journalism, journalist, Washington DC, DC, bookworms, bookworm, book worm, book worms, book chat, @politicsprose, book discussion, author discussion, book video, book event, author event, book tour

Id: Ntvrk1-pqj0

Length: 57min 33sec (3453 seconds)

Published: Fri Jul 07 2023