>> good morning. welcome to mosaic. i am rabbi eric weiss and honored to be your host. we are about to begin an interesting conversation about breast cancer but in a different way than we are usually used to in our community and culture. i would like to introduce to woody wine garden who has written an interesting book called roller coaster, how a man can survive his partner's breast cancer and introduce you to rose barlow, executive director of an organization called zero breast cancer based out of marin county. welcome. >> thank you. >> rose, let's jump to you real quick and ask you what is your
organization? >> we are a community based organization. we have been dedicated to finding the causes of breast cancer, particularly those in the physical and socioeconomic environment and to find ways that we can educate the community about risk reduction so that they can help to lower their risk or avoid breast cancer all together. >> so your clientele so to speak is both women, men, families, medical, legal community. >> correct. >> a broadly based consumer target base. >> exactly. you can say for societies. there isn't one unfortunately untouched by breast cancer. what we are sharing comes outs of research that scientists are doing and we are translating it in the community so they can do something practical with the information. >> lovely. woody, you have a different perspective. your wife nancy had breast
cancer. why don't you just kind of jump in and tell us how you came to write your book? >> i started by doing a journal when she was in the throws of the treatment. then i realized shortly there after that what i had experienced and what i had to say could help other men in similar positions. >> so people journal for different reasons. that's a very personal kind of experience. but for you, were you someone who kept a journal normally? was it something that you started to do because of your wife's breast cancer? how did you come to actually write about your experience? >> i am a life long journalist, professional journalist. but private journals were done erratically throughout my life, sporadically. this one was done out of necessity. it was therapy for me. so it got very personal and
very honest, and that's what the book ended up being. >> when did you actually begin to journal? >> just when she was diagnosed, the day she was diagnosed. >> and now the book is published. >> yes. >> when in your experience does the book itself end? >> it doesn't end because cancer is chronic and it's always there. what the book does is have hope. there have been 15 books in 15 years written by men about their partner's breast cancer. 14 of them are out of date, i believe. mine is current. the fact is that men are the forgotten part of the equation. the wife is threatened. her life is threatened, so the focus is on her. men's universe is threatened and turned upside down, and most people ignore the man despite the fact that the man has to be there for his wife
all the time, 24/7 in effect, and be passionate and compassionate at the same time. >> breast cancer is one of the illnesses in our culture that is really rapidly changing in terms of the insights of the experience itself, the medical aspect of it in terms of research and treatment. i am sort of wondering then from each of your perspectives what is current? what is current from the perspective of zero breast cancer? then we can ask the same thing from his perspective. he said there are 15 books and 14 are not current. what's current for you? >> literally yesterday we launched a group of people who are involved with breast cancer survivors. we learned that 23% of all cancer survivors in this country are breast cancer survivors, which is kind of a good news bad news. it means there has been real progress in helping people not
have literally a death sentence when they hear that they have cancer but it leaves people who live with greater levels of risk and greater levels of fear about breast cancer recurrence. so one of the things that zero breast cancer is starting to do is to look at prevention of a second or recurrence of breast cancer, not just prevention of the sort of primary disease. that really is probably the most up to date development that i can share with you. >> woody, from your perspective, what makes your book current, your experience current? >> well i have done extensive research with medications, drugs and with research itself. it constantly changes. for example, when my wife was treated, she lost her hair almost instantly during the chemo. that has been alleviated to some degree now by a chemo
cocktail being changed and the one component of it that caused that is no longer there or is a lesser dosage. also, there are all sorts of new drugs that didn't exist 20 years ago that will extend life, not necessarily cure things, but are better. the technology has improved, and the doctors are more aware. they're also more aware that they need to incorporate nonwestern medicine techniques sometimes. >> woody and rose, we are off to a wonderful start. we are going to take a quick break. please join us in a moment as we return to the important conversation about breast cancer. totally. i did. did you know that boys that play with dolls make better husbands?
my son has lots of dolls. but did you know terry cloth diapers breathe better? i did. oh, yeah, yeah. did you know that strollers have the right of way on a sidewalk? yes. yup, i did. did you guys know-- did you know that kids who eat breakfast have higher gpas? yeah, i know. yeah. that's actually what i was going to say. did you know babies should never touch silver? it's really bad for them. i knew that. did you guys know that statistically friendly kids have more friends? mm-hmm. that's obvious. did you know most people think they're using the right car seat for their kid, but they're not? announcer: parents who really know it all know for sure that their child is in the right seat at the right age and size. visit safercar.gov/therightseat to make sure your child is protected. i'm putting that on my blog. i just put it in mine.
>> welcome back to mosaic. i am rabbi eric weiss. we are in the middle of an informative conversation with woody weingarten and rose barlow about breast cancer. rose, i know that you deal with all classes of people, people from all stations of life as it impacts breast cancer. we certainly know all illnesses, that it touches every class, every race, every station in life. i am wondering if you can talk a little bit about that perspective of the experience? >> we're increasingly bringing our focus to the under served communities in this conversation. when we started off we were marin breast cancer watch and founders were people affected by breast cancer but also
people who for the most part had significant resources they could call on, not just material, but also educational resources so they could sort of understand and engage in a similar way to the approach that woody has taken, some research of their own, asking questions of doctors, having english as their first language. now we are really starting to pivot our efforts and apply our learning to communicating with those communities that are not as well resourced. for socioeconomic reasons, english is a second language, lower skills. there is a lot of work to be done there. i am happy to talk more about that. >> woody, your book is your particular reflection of your experience as a husband with your wife with breast cancer. we know there are plenty women who are otherwise single, might have a best friend or companion that they moved through the
illness with, lgbt folks, etc. i am wondering to what degree though your experience is singularly your own but you have written a book and all books have a universal appeal. to what degree do you view your experience in the book as to responding to the support system of anybody with breast cancer? >> i would like to say that my book is a hybrid. the journal part that i refer to are three sections of the book about the chemo, the radiation, and the surgery. the rest of the book is expository material. there is a chapter on a support group i have been running for 20 years called marin man to man. it's a group for men whose partners have or had breast cancer. we are expanded it. we have a man in there now who had breast cancer himself and there are 2500 men with breast cancer each year. >> can you talk a little bit
then about -- one of the things i think in any illness and certainly with breast cancer is people don't really articulate i think enough about the personal impact of body image, about relationship, around issues of sensuality, around issues of sexuality, around issues that people sort of need to adjust to relationally, about issues that impact one's ability to work, sort of the emotional roller coaster. can you talk a little bit about some of those things in the context of your experience? >> i could, but to answer everything you brought up you have to read the whole book. >> of course, sure. >> meanwhile, the image that women have can be destroyed during breast cancer because they may need a mastectomy and that will change their physical appearance. some men will react badly to
that. some women will react badly to that. the hair loss that still exists is a big deal. it may mean getting a wig. it may mean watching your hair grow in as my wife did in different colors. support is important, critical in fact, coming from wherever it comes from. i recommend that women and men find a group if it's possible of support. if you believe in therapy in terms of therapists, find that. use friends. women in particular need women friends who can relate to them on the physical basis to give them that support. men need to get out of the way sometimes. my wife, one of the things i learned was sometimes she just wanted me to hold her hand and squeeze it and shut up. that became very important. it became very important that i not play the macho man role. i would have trouble with that
anyway. but that is not what women are looking for. they're not looking for the fixer in these circumstances. they're looking for people who can understand to some degree what they're going through and who will be there doing pretty much what they want them to do. >> thank you. we are going to take a quick break and come back in just a moment as we continue this important conversation with woody and with rose. please join us in just a moment here on mosaic. ,,,,
>> welcome back to mosaic. i am rabbi eric weiss. we are in the middle of a good conversation with rose barlow and woody weingarten who has written a book called roller coaster about how a man can survive his wife's breast cancer. welcome back. the world of illness in general and certainly with breast
cancer is layered with issues around prevention, genetic profiling and really coming to understand generally speaking but also individually what your own personal profile looks like when it comes to breast cancer. can you talk a little bit about the world, about issues of prevention, issues of knowledge and what is important to know about yourself? >> right. about 10% of all cancers are genetics. i will talk from a personal standpoint about that and then i will talk about the others where there isn't necessarily the sort of clear cut understanding of what might be your risk factors. i lost both my mother and her sister to ovarian cancer when they were younger than i am. i was fortunate to have doctors in africa, london, scotland, now here in the bay area who took the family history very seriously even before we knew about the gene.
they put me in touch with genetic counselors and helped me with a course of action to help me stay ahead of the familial risks. we were able to determine that we did have the breast cancer gene that's very prominent in some communities. armed with that knowledge over 25 years, i have been able to do some things that have helped to get me to this point disease free at this time and i hope to continue to be disease free, sort of general counsel i can give to people particularly with the ethnic background is know as much as you can about family history. not just on your mother's side but on your father's as well. >> i think a little bit of details and i am not sure to what degree the medical community is caught up with this but it used to be in terms of medical history women most exclusively about maternal generational side of the family
in terms of the gene and breast cancer experience. i think that it has come to be understood that a woman needs to understand the fullness of her paternal side because it does have significant influence in terms of the gene and the development potentially of breast cancer. >> in my case it was my maternal paternal side. so it was my mother's father's side where we have been able to really identify the history of the gene. it's shown up in what were nieces of my late grandfather as well. that's how we have sort of been able to really kind of verify this. it hasn't shown up on my maternal grandmother's side at all. that's how we have been able to tell. there is an organization call facing our risk empowered. it is the go to resource for information about genetic risk and how to deal with it.
i will put a plug in for them. turning to the rest of people, women and some men potentially at risk for breast cancer, it isn't necessarily that clear cut. it appears sort of random in families. nobody quite knows why. we have been partners with some researchers, dr. larry cushy in kaiser who have been doing longitudinal studies with girls starting with eight year old girls some of whom are now ready to graduate high school. >> i think we are going to put up a book you brought so we can show folks what it is going to be. what is the new puberty? >> the new puberty is a piece of work that didn't come directly out of the one we have been doing with kaiser but some of the researchers and doctors who are associated with that team have done more detailed
research both into the physical development of young women in today's society as well as some of the psychosocial influences on them and what they have documented is that in many communities puberty is happening at an earlier and earlier age. puberty has been shown to be associated with -- early puberty has been shown to be associated with increased lifetime breast cancer risk. and the belief is that what's driving this early puberty is it is linked to other observations we hear in the news about an epidemic of obesity, lack of physical exercise, poor diet, these are factors that can contribute to early puberty and early puberty becomes a risk factor over a lifetime for breast cancer. >> a lot of issues around public policy and other issues in society. we will take a quick break and come back to mosaic in just a
did you know kids who play outdoors have healthier lungs? totally. i did. did you know that boys that play with dolls make better husbands? my son has lots of dolls. but did you know terry cloth diapers breathe better? i did. oh, yeah, yeah. did you know that strollers have the right of way on a sidewalk? yes. yup, i did. did you guys know-- did you know that kids who eat breakfast have higher gpas? yeah, i know. yeah. that's actually what i was going to say. did you know babies should never touch silver? it's really bad for them. i knew that. did you guys know that statistically friendly kids have more friends? mm-hmm. that's obvious. did you know most people think they're using the right car seat for their kid, but they're not?
announcer: parents who really know it all know for sure that their child is in the right seat at the right age and size. visit safercar.gov/therightseat to make sure your child is protected. i'm putting that on my blog. i just put it in mine. >> welcome back to mosaic. i am rabbi eric weiss. we are at the tail end of a conversation about breast cancer with rose barlow and woody weingarten who has written a wonderful book called roller coaster, how a man can survive his partner's breast cancer. woody and rose, there is so much always on the future of breast cancer and always on the edge of hope. what does the future look like from your perspectives around issues of breast cancer? >> ladies first. >> from a community engagement
education and outreach point of view, for us the future is those young women who are currently in high school. so we are very excited to start thinking deeply about how to engage that group, not to drive them crazy with fear, but to encourage them to be educated, to educate their peers to do the things they can to prevent cancer and also consider going into the field. we need a new generation of advocates, communicators, healers, careers, scientists. that's something in our future that we are very excited about. >> i think there is a proliferation of organizations now about breast cancer. 20 years ago, the word breast was a word that people didn't use in public. we have gone way beyond that. and organizations now are springing up all over the country, all over the world in fact, that are helpful, that are giving money to research,
that are doing enormous amounts of research. it is very positive. my book is what i call the light at the end of the tunnel. it shows that people can survive, both the woman, the husband or partner, the relationship itself. nine out of ten relationships end up closer at the end of the treatments because of what they have gone through. it can be a positive experience despite the negativity, despite the difficulties. >> you know, from your perspective, there is just so many layers of this that are in some cases political and in some cases scientific, some cases the practice of medicine, personal educational aspect of it, there certainly is public policy. even now, what would you say
would be an under served population or an under served thread to the issue of breast cancer at large? >> i do think economics play a big role. so i think the most economically disadvantaged in our communities are most under served. i think we need to draw our attention to them. some of that links back into the way medicine in general, accessibilities to preventative and cure care in the country to people is a huge challenge. >> a public policy issue as well as pure scientific access issue. >> i make reference in the book to the lesbian community, to the african-american community, to the hispanic community, all of which do not go to doctors with the same frequency that
the more wealthy white community does. therefore, their survival rate is lower. >> rose and woody, thank you so much for helping us with this really important conversation. certainly there are lots and lots of layers of this conversation that we did not get to but have touched on. we hope that this will just be a comma in the conversation for you to engage this issue on whatever level that you do. thank you so much for being with us here on mosaic. ,,,,,,,,,,,,
our pitch....if you have a idea......we would love to from welcome to bay sunday. i am your host frank mallicoat mallicoat. it is good to have you on board. if you have an idea, go to our facebook page and we will get in touch. a sports psychologist has motivated athletes to reach goals in athletic competitions and life. she's coached them all and is sharing her thoughts in sisterhood in sports, how female athletes collaborate and compete. how are you? >> good. >> good to have you on board. >> nice to be on board. >> you have been in the