WGBH Radio; The Callie Crossley Show

I'm Cally Crossley This is the Cali Crossley Show. We continue our innovation series with a look at health care. When Dr. Julie silver was diagnosed with breast cancer the treatments left her feeling ill and weak when it was time to go back to work. Dr. Silver was still in pain. She was still tired. A rehabilitation physician herself she knew rehab was the norm for patients who had suffered a stroke or even a broken bone. So why not those with cancer. Dr. Silver is using her experience as both doctor and patient to implement rehabilitation clinics for cancer survivors. When a doctor gets sick it can change the course of health care. From there we look at a new multimedia installation designed to help people heal. Letting them flesh out the biographies of loved ones they've lost to violent crime. Up next the power of healing in body and in spirit. First the news. From NPR News in Washington I'm Lakshmi Singh. The latest jobs

report offers a bit of hope for improvement in the labor market the government says the number of people who file for unemployment insurance for the first time has dropped to a seasonally adjusted 390000 last week. Wells Fargo Securities John Silvia says it's encouraging that suggest to us that there are fewer and fewer layoffs happening in the U.S. economy. And over time historically that's been tied to further job gains. So that I think is very good news for the U.S. economy. Now the housing sector remains under pressure but the latest numbers on foreclosure activity across the U.S. suggest banks are moving past the so-called robo signing controversy. NPR's John Snyder reports lenders seized more homes and set out more first time default notices in October. The figures from Realty Track show Linda repossessions rose 4 percent in October to more than sixty seven thousand homes and first time to full notices who are up 10 percent from September. But even though foreclosure activity rose last month it's still way off last year's

pace RealtyTrac CEO Jim Castillo says there have been bottlenecks in the process which are now being cleared. We have a long way to go only because when you look at this it's been like a baseball game we've been kind to you know. At one point I felt we were currently in the seventh inning. And today it looks like we keep getting these rain delays. Nevada still holds the top spot for state foreclosure rates. But of all metro areas Las Vegas dropped to fifth place replaced by Stockton California is number one. Giles Snyder NPR News Washington. Mortgage giant Freddie Mac says the average rate on the 30 year fixed mortgage fell last week below 4 percent. Only the second time that's happened on record Freddie Mac says the rate fell to three point nine percent the figure was slightly lower about five weeks earlier. The average rate on the 15 year fixed mortgage Meanwhile also fell last week to three point three zero percent. The Israeli Supreme Court is upholding former president Moshe could SOB's prison sentence. Linda Gradstein

reports that Cutts is the most senior Israeli official to be convicted of rape charges and he is due to spend the next seven years behind bars. The three judge panel on the Supreme Court agreed that Katsav had lied when he denied that he had raped an employee when he was the minister of tourism. He was also convicted of sexually harassing two other women when he was the president of Israel and obstruction of justice. Katsav was sentenced earlier this year to seven years in prison and the Supreme Court today upheld the verdict. He resigned as president in 2007 after the allegations first surfaced. For NPR News I'm Linda Gradstein in Jerusalem. At last check on Wall Street the Dow is up one hundred twenty six points at eleven thousand nine hundred six Nasdaq also up seven points. This is NPR News. At least 10 people are reported dead after a second earthquake struck eastern Turkey in less than a month. The 5.7 magnitude temblor hit the city of Van yesterday and it compounds the

misery already caused by the last earthquake in which hundreds of people had died and thousands more were displaced. Engineers at Russia's space agency are racing to save a mission to Mars widely viewed as the country's return to the forefront of space exploration. Peter Van Dyke reports from Moscow the ground control is attempting to turn on the broken probes main transmitter Russia still hopes to send the Phobos spacecraft to the tiny Martian moon of Phobos and bring rock samples back. But time is running out. The crafts engines fail to fire as planned and it is stuck in Earth's orbit. Experts say a computer problem could be fixed but there is little hope if the fault is mechanical. Mars missions are notoriously problematic and only two of 18 Soviet and Russian attempts to explore the red planet have been even partially successful if Russian ground control can't buck the trend and get the spacecraft back on track. There are fears it could fall back to Earth possibly bringing more than 10 tons of highly toxic fuel with it. For NPR News I'm Peter Vandyke in Moscow.

In Greece a new prime minister warns the country's economic woes will get worse despite major austerity efforts already made and those issues he says will be solved faster with unity and cooperation. Lucas Papademos whose name interim prime minister of a new unity government today several days after several days of power sharing dialogue at last check the Dow was up 126. This is NPR News. Support for NPR comes from CenturyLink providing broadband entertainment and voice products to Americans coast to coast. More and more at CenturyLink dot com. Good afternoon. I'm Kelly Crossley. Often a new and original approach to any given problem starts with a personal experience and such is the case with my guest today whose story is the focus of today's edition of our ongoing innovation series reinventing the future. Dr. Julie Silver

joins us to talk about her push to make cancer rehab services available to as many cancer survivors as possible. Dr. Silver is an assistant professor of Harvard Medical School. She's on the medical staff at Massachusetts General Brigham and Women's and Spaulding Rehabilitation hospitals. She is also the co-founder of oncology rehab an innovative health care company breaking new ground in the field of cancer care. Dr. Silver thank you for joining us today. Thank you Cali it's a pleasure to be here with you. Before we get into the story of cancer rehab we have to learn your story because that in fact led you to develop the whole concept behind cancer rehab. So talk to us about your personal experience that left you in a position to see what other people had been experiencing. Well when I was in my 30s I was practicing medicine as a rehabilitation physician FSI a tryst and I was diagnosed with cancer with breast cancer and I had three little kids at home I had actually just had a baby

and went through several work ups finally found the cancer and then I was really stunned at how I felt going through treatment of course you expect to be shocked by the diagnosis. The treatments are hard but at the end of treatment when I really wanted to reclaim my life I wanted to go back to work and I wanted to start feeling better be the mom that I knew I could be and I had been before the wife the sister the daughter the friend the doctor all of these roles that I played in my life. When I was ready to do that and feel good again my oncologist who is fantastic a wonderful oncologist said OK you're done. You know go home and then go back to work. And I thought wait a minute where's the help here where's the rehab you know we we don't do this with people do we. And I realized that we actually did. It was very counterintuitive having taken care of so many people with serious illnesses illnesses and injuries that I was I was really very surprised that that cancer we don't rehabilitate people very

often. So at the end of your treatment when he said you're done go home you were well let's say the kids was in remission or you were cured at that point but how were you feeling. Well I went into treatment feeling fantastic I was in my 30s and it was picked up on screening tests that were done because I was worried that I had a lump. And so I went in feeling fantastic and by the end I felt worse than I'd ever felt in fact I did some exercise testing with a colleague who performed it on me because I never had formal rehabilitation. And I tested in my 60s and I thought Oh my goodness this treatment has aged me 30 years three decades. So you're feeling worse than you did when you know what you know some might say well that's understandable you've just gone through a really you know cancer treatment is really rough it's toxic in every way shape or form mentally physically. The Whole Nine Yards so at the end it's not not unusual that you would feel bad but I think what the part of the story that other cancer survivors listening to this would would understand is the doctor saying well you're done and

you should be able to just pick your life up. I thought was really interesting that you said that the phrase that you keep hearing over and over well this is the new normal. Right. Well you know it's so interesting what you just said too because a lot of people do say that well of course you expect to feel bad. Well let's say that you were in a serious car accident and you of course you would expect to feel bad right. But you'd also expect medical care wouldn't you. I mean would you really expect people to say OK you know you should feel bad because you have this terrible accident but go home and just heal and figure it out of course not. Absolutely not. You get medical care you get rehabilitation medical care. Same with if you had a stroke if you had a stroke people would say this is terrible. You know really have empathy for you but they wouldn't tell you to just go home and figure it out. So that's really where the difference is and that's where the disconnect really is is that if you substitute stroke or car accident or some other term for cancer all of a sudden people understand

oh rehabilitation we should be giving this to people we shouldn't just be saying you know of course you're going to feel bad. Well one of the things I think if I use an example of stroke is that if you know anything about stroke even a little bit you know OK well probably it's a person who's maybe lost some speech maybe lost some some ability to move a limb. So they're going to really have to do that. If you put in your mind what is a cancer patient or cancer survivor going to get rehab for so maybe you could just articulate for us one of the specific kinds of rehabilitative services that are particularly helpful for cancer survivors. Well there are many. And cancer of course includes lots of different diagnoses and lots of different treatments and so the presentation of these patients can be very different. But let me give you a couple of examples. One example would be a head neck cancer survivor. And this patient isn't returning to work and is depressed and seeing a psychologist or social worker. If that psychologist or social worker

is really savvy and really understands rehabilitation medicine and understands the research that's been done already on head neck cancer survivors that individual will know that probably the reason this person isn't returning to work is because they lack cervical range of motion and have it return to driving. That's in the MC that's in the neck and yeah so the cervical range of motion is how you turn your it how you turn your head to look for other cars. And the research shows that a lot of head neck cancer survivors do not return to driving because they don't have good control of their of their head they can't look real. Well you know when they turn their neck. And so of course they're grounded at home. They're not going back to work. They're not going out in the community. Yes of course they're depressed. Another example would be a woman with breast cancer. So let's say she's had a mastectomy and she has she never got rehabilitation afterwards and she had this big surgery and maybe if this was followed by chemotherapy or radiation treatment her shoulder in her chest area hurt. She doesn't have good range of motion in her shoulder. She

rolls over on that affected side at night. It wakes her up at night she's in pain and she thinks Oh my goodness my cancer is back. She goes running to the oncologist and says I think my cancer is back. I have night pain. I'm really uncomfortable I'm so scared. And instead of actually addressing the healing issues that are associated with surgery like that and chemotherapy and radiation and improving her range of motion in her shoulder and taking care of all that pain so that she feels better. It's missed gets a workout. And then when the work ups negative perhaps she sent for physical therapy. So you were perfectly positioned by way of your expertise in rehabilitation services and will being a physiatrist understand the body and how it moves. And then also having had a personal experience with cancer to develop a program so. Talk about how you develop this program of rehabilitative services understanding as you just pointed out that there are many different

kinds of cancers and so there may be individual needs met in different ways depending on the patient but overall your your rehabilitative services that you came up with includes what. What is a program look like. So that's a great question and the program looks like this. First of all we're talking about doctors physiatrist who are board certified in Physical Medicine and Rehabilitation. So just like oncologists know their specialty physiatrist also know their their field of medicine they know the research and how to help patients heal as well as possible rehabilitation medicine also includes licensed health care professionals such as physical therapists occupational therapist speech and language pathologist and rehabilitation nurses. These are all health care professionals whose care is reimbursed by third party payers or health insurance. So we're talking about medical care that the reach that that the research supports that your health insurance will pay for. That needs to be implemented in hospitals where there's

these teams these multi-disciplinary teams. And when I when I started talking about this the first thing I actually did was write a book called after cancer treatment heal faster better stronger and that was a book for cancer survivors to really tell them hey here's how you can heal. But of course this should be done in tandem with health care professionals. So I went around the country and I started talking to my colleagues to doctors and other health care professionals and say you know we really need to do this we need to implement this kind of care in a multi-disciplinary best practices manner. And every time I went somewhere to give a speech or grand rounds or whatever everyone would agree there was no one that said oh that's a dumb idea why should we help these people. They all agreed. But what would happen when I would come home is I would get all these phone calls and e-mails and say how do we do it. How do we do it. And that is a more complicated conversation. And that's really why I developed the star certifications which are survivorship training and rehabilitation to help these hospitals and cancer centers develop the best practices model. And what does it include.

So the first part of it is really to train the health care professionals that are at that hospital. What I learned was that they were very smart very dedicated people at every hospital in the country. Everywhere I visited really smart really dedicated people sitting in the room listening thinking about this and caring. You cannot get more empathic people than an oncology team. They are so empathic they really care about these survivors. So what I needed to do was to educate them about what the research says about how to heal quickly and well as well as possible. This idea of accepting a new normal has to be put on the back burner and to say we're not going to accept a new normal until we see how well we can help you heal. And that's really really the goal. So we educate the health care providers at that hospital. Then we implement protocols that are very similar to protocols that are in all other aspects of medicine like oncology things that are based on research that help you develop these these best practices and treat these patients in a streamlined

appropriate way. And then we track outcomes and really see what we're doing right and what we can improve on. Well we have much more to talk to you about this innovation and health care and we'll continue our conversation with my guest Dr. Julie silver on the other side of the break. She is the co-founder of oncology rehab a health care company breaking new ground in the field of cancer care. And we will continue this conversation about eighty nine point seven on the Kelly Crossley Show coming up real soon. Stay with us. WGBH programs exist because of you.

And UMass Memorial Medical Center and their Euro gynecology team specializing in surgical and nonsurgical solutions for urinary incontinence and other pelvic floor disorders. White papers online at UMass Memorial dot org slash for women. And Boston Private Bank and Trust Company Boston private bank provides private and commercial banking and investment management and trust services to individuals and businesses. You can learn more by visiting Boston private bank dot com. And Newport Restaurant Week now through November 13th. You can experience a three course prix fixe lunches and dinners and over 50 participating restaurants to learn more. You can visit go Newport Restaurant Week dot com. I was only human. Kiersten done stars in the new psychological drama Melancholia about depression and the end of the world. On the next fresh air vents talks about making the film and working with the controversial director Lars von Trier. Join us. This afternoon at two on eighty nine point seven WGBH.

Local national and international. The news you hear on eighty nine point seven comes to you because of individual support. And this program is coming to you fundraiser free thanks to WGBH who's sustaining members sustainers break their gifts down the monthly installments that automatically renew. It's easy it's efficient and it means less fundraising. But that sounds good to you. 8 8 8 8 9 7 9 4 2 4 4 sign on as a sustainer at WGBH dot org. The American Dream is being redefined convolve see where we live continues next week with stories from Massachusetts towns about how economic realities are influencing the American dream. That's next week here on WGBH radio. Welcome back to the Kelly Crossley Show. If you're just joining us we're talking about innovations in health care. My guest is Dr. Julie silver. She's a physio

physiatrist which means she is an expert in Physical Medicine and Rehabilitation. She's also the co-founder of oncology rehab partners and innovative health care company breaking new ground in the field of cancer care. A long time ago I worked at ABC News in New York specced in New York on 20 20 and I got a really heartfelt letter from a cancer survivor saying you know as much coverage as many people do and most of the media does about cancer survivors treatment etc. etc. I've never seen anybody talk about the excruciating fatigue. And just when I was really just a well told well written letter so I tried to pitch it to my bosses but they couldn't get their heads around. For tea I mean they're already tired. So I wonder if you could address just this kind of because the way that I still remember that letter we never did the story but I remember thinking wow I didn't know that that was as huge a problem as it was.

It is a huge problem. And thank you for bringing that up. You know Kelli when I came in today first thing you said to me was this is an important story and we wanted to do it. And I really appreciate that you obviously get it cancer related fatigue which is different than your regular tiredness. And it's different because the rest doesn't seem to alleviate it because it is so profound and because you can't do the things that you want to do You can't do your usual activities. That is so disabling one of the things that's very interesting right now about some of the new research that's coming out of cancer survivors is their level of distress and how we're measuring that and the number one reason for distress is people's decreased ability to function. It's not the cancer diagnosis itself it's the decreased ability to function of which cancer related fatigue is a huge problem. The good news though is that there are very good interventions to help with cancer for with cancer related fatigue rehabilitation interventions that

we focus on in you know physical medicine rebuilt patient including physical therapy interventions and so on. These these are so helpful to survivors and they often don't get it instead what they're told is go to an exercise class or take a walk or whatever. And again if we bring that back to the person that's been in a car accident or the person that's had a stroke if we said to the stroke survivor Why don't you go to a yoga class and you'll feel better. We would really laugh at that advice. I mean that is not good medical advice. And the same is true when someone complains of this profound fatigue to say go home except the new normal or wait it out or go to a yoga class. That is not evidence based acceptable advice. So is it as part of what you were up against as you start to try to put the star program together which is a rehabilitation program for cancer survivors is really a profound lack of understanding. Even as ubiquitous as it is about cancer and how it impacts the body it seems to me that there is a lot that we don't know because if a pregnant woman

says she's tired people get that. It's true you know true. People don't understand this well. Cancer survivors understand it because they live it. They understand exactly I'm sure you'll get calls and e-mails and letters saying oh my gosh thank you for doing that show. That was me I got that right away and so on. And doctors actually do get this because they hear it all the time in their offices. The disconnect comes with what do we do about it. So you have cancer survivors who understand it and you have doctors and other health care professionals who know that this is a problem. But the disconnect is what do we do about it. And what do we do about it. The answer is cancer rehabilitation. So when you came up with Star and let me it's survivorship training and rehabilitation program that's what it stands for. But it did eventually get picked up by different places around the country so it's been out there. Individually for what two or three years right a couple who lives here right across the country in a number of different states perhaps half the states in the United States had adopted it

individually. You know Johns Hopkins is is one of the Star programs that we have so for so excellent medical centers. But you're right it was very patchy and sporadic which brings us to you know this is our ongoing series called Reinventing the future about innovation. So here is a very innovative step that you've taken with this program with the state of Rhode Island. Talk to us about what's going to be happening there. Rhode Island is such a great state I'm so so proud of Rhode Island. Thank you for bringing cancer rehabilitation to your survivors Rhode Island. What happened was I started looking at the cardiac rehab literature and I started going back to the 1920s and 30s and looking at what they did and what happened was New York state actually got smart and they said we have so many people out on disability who've had a heart attack that they had a heart attack and just stopped working and we're paying them for the rest of their lives. We have to do something about this we have to offer them some way to to go back to work and and live their lives.

So they this invented these work evaluation units which lead to cardiac rehab. And as I looked at that model of New York state doing that for cardiac rehab I thought that if we could get one state to offer cancer rehab in a best practices model to all of the survivors in that state so every survivor instead of e-mailing us or calling us or whatever and saying Where can I get excellent cancer rehab we could say it was a hundred miles away or 200 miles away we could say it's right next door. It's within a short drive to your from your home. So we worked with the Gloria Gemma breast cancer resource foundation government officials on a lot of different hospitals group practices and so on. And in October of 2011 with the governor Lincoln Chafee and and I and a big group of health care professionals we announced at the state house in Rhode Island that beginning in in the first quarter of 2012. So January of

2012 February 2012 in March that every cancer survivor in Rhode Island will have access to a Star certified hospital or practice. Wow. So how many rounds of small states oh so many people are talking and how many locations and all of that. So we have about 20 different locations and multiple different hospitals and group practices and some still signing on as well. So Rhode Island decided to do this because they too wanted to see what would be the result of really offering this you know state wide what what prompted the state wide support. Because that's something that I know that you wanted to have happen. I think the state wide support really came about from talking to individuals who as I said earlier you know people in cancer care they really are empathic they really want to do the best for people for their patients. They're they're thinking a lot about this. So one of the first things that we did was we had to sort of town hall meetings with and we

invited health care providers government officials sort of anyone who was who was helping helping to direct cancer care in Rhode Island we invited them to come and just listen listen to what cancer rehabilitation is about. Listen to what it would mean to have the Star program implemented in their hospital. And so on so we held two of these in sponsorship with the Gloria Gemma Foundation and we had groups of probably about 40 to 60 people at each meeting and everyone was doing exactly what they what you're doing right now which is nodding their heads saying yes we need this. Absolutely and it was that's really what started it. So now what you have is kind of a it's both an incubator in some ways but also a way to assess in a really global way extensive impact of this cancer rehab Scuse me is what do you expect to find at the end of I don't know two years of really implementing this program and having cancer survivors take part in it.

Well we expect a few things Number one is we expect other states to follow. We expect other states to say we need to be offering best practices cancer rehabilitation care. So we're hoping that other states will see this as something that they can do that they can implement Yes Rhode Island is a small state but the star program is so easily implemented because it's really a turnkey his key solution that we want other states to follow. Another thing that that will come out of this is a lot of research about. What is working well. Who needs care how much care do they need. What kind of care do they need. What's working well and also some problems and how to fix those. So we're talking about outcomes and this is very outcomes driven in terms of really changing care we want to make sure that oncologists are referring these patients so that even though there's these programs people have to get to them or they won't work. So we have to make sure that oncologists are referring these patients that the patients are receiving adequate

care. We we hope they're receiving awesome care that's the goal. But we want to make sure they're receiving anough that their insurance is paying for enough visits and so on. Now you know speaking of insurance anytime you mention health care these days you know the cost of health care comes up and because there's a lot of states. Not to mention local communities trying to figure out how to pay for even the most basic care. So when you made your case to Rhode Island about expanding this program across the state they had to be looking at a bottom line situation too because Rhode Island and it in a pretty pickle economically. So so what was persuasive to them about this if this was going to be cost effective as well as helpful for for the folks who need it. Well that's a really good question and one of the things that that I always say is that I can't fix all of her health care certainly I can't fix all of the issues with reimbursement and so on. But what was happening before was that either patients were getting

were not getting referred at all and they were just going home or they were getting referred maybe to an exercise class or something else that they often would have to completely pay for. That wasn't necessarily the highest level of care that they should have and could have been receiving and also. That they weren't aware that their insurance would actually pay for these services yes they might have a co-pay and so on so when it gets to the question of who's paying for this and how does this work. It's very similar it's exactly the same really as the kind of care that you get after a car accident or a stroke or whatever that your Medicare will pay for it your BlueCross BlueShield will pay for it. Do you have a co-pay. Probably you know most of us do have co-pays but your health insurance will absolutely pay if it's implemented by in a best practices model and that we're talking about professionals and rehabilitation medicine. I wonder is also part of your discussion has to do with the fact is that's what struck me in reading this

material. They were not talking about people who are. Disabled for Life you know for whom there's a different set of issues. We're talking about people who are unable to function they could function if they could address some of these issues and go back to work and so then therefore they would be presumably you know taxpaying citizens as opposed to being at home trying to figure out how do I turn my head to drive my car to get to work as you explained earlier so that seems to me to be a very powerful for any community that is looking to have as many able bodied workers as possible. That's exactly right. We want people to go back to work we want them to function and uncertainly and cancer as in all other serious illnesses there's a spectrum of disability so some people are not very disabled and some people are very disabled there are plenty of cancer survivors who are very disabled. That doesn't mean that they can't function at a higher level if you think of someone in their home who's very disabled. They require a lot of care. Huge burden on caregivers and on the medical system too. But you're right if we return people to

work that helps everyone. And you know it has this amazing ripple effect when I went back to work. My husband benefited my kids benefited my entire family my patients I mean this huge ripple effect with all these other people helped just because I went back to work. There is a statistics that in some of the research material that looked at this sort of gave me pause and we've referred to stroke a couple times in this conversation. But there are twice as many cancer survivors would make sense as you think about it as there are Stroke survivors. So then if you multiply that out to how many people are in need of these services that's kind of daunting. It is daunting and that actually it's daunting to a lot of hospitals when they say do we really have to treat all these patients. And my answer is yes. My answer is this is not a boutique service. When you help 5 percent of your patients that you're treating for cancer if you're an administrator in a hospital if you're an oncologist if you're running a cancer program please please please be thinking that you need to help with

rehabilitate. Ninety nine percent of your patients to get them better some patients will never be candidates for rehabilitation because of their prognosis and and the way things happen. But the vast majority of cancer survivors will benefit from rehab. And it's our job to ensure that happens. Just like if someone's diagnosed with cancer the vast majority will respond to some kind of treatment. What do you hear now. We don't know yet from Rhode Island because that's just going on but as you have gone around the country to those places that had those isolated places that had the program going for a while. What do you hear from the people who found their way there by fluke or you know maybe somebody in the hospital tell them about it or whatever. What are they saying to you. You know what some of them say. They say Julie silver you are an angel and you know what my response to that is is that that's heartbreaking to hear. Because if they think that I'm an angel and this is a miracle then we're not doing our job in

medicine. This is evidence based medicine that needs to be implemented everywhere. And this is not magic. This is not miraculous. This is not about angels this is about providing excellent medical care that's based on research from people who are trained in this kind of care. It's not the same thing but as we think about innovation though. Those of you who innovate in this way really are looking at problems hidden in plain sight and then trying to apply some real world solutions so we can look around and see all of that. I mean that was the beauty of what Steve Jobs did as well at Apple. So I can see that you don't see yourself in that position necessarily but I wonder if you're when you're at home quietly you think wow you know I put this together based on not only my expertise as a medical professional but also as one who had lived through this and did either one of those experiences actually boost you further down the line to come up with this plan or was it about equal. You know it's so funny because my kids would never agree that I'm an angel.

You know whenever you have kids you realize till you're around it you're very good you're grounded and you know one of the things that that with so wonderful about Rhode Island is we actually went to the State House on this on this very warm day in October and we were literally all sweating you know including the governor all sweating in the statehouse and we took this picture and I looked around and there were. I don't know 40 50 60 people they're all sweating getting together and really just saying her a we're doing it. And you know it wasn't just me. And it's not just my idea it's not just my work my the co-founder of the company is Diane Stokes who's been fantastic at working with me and helping to implement the technology so that we can train these people online and really implement these programs. I have a whole team at oncology we have partners that I'm working with that are helping hospitals directly to implement these programs. The governor the folks at the Gloria breast cancer resource foundation all of

these different people deserve credit and they're really what's making it happen. It would never happen if I didn't have all these other people that I was working with. And from a personal standpoint it's been some years now since your own breast cancer experience and since you had to really suffer afterwards without the kind of rehabilitation program that you put together for other people. How do you look back and view that experience in the context of what you've done here. Well I refuse to accept the new normal. And I knew that I could rehabilitate myself it was hard and I didn't want to because I was so tired and so discouraged. But I had these three little kids at home and I really wanted to reclaim my life. And as I started to feel better I really wanted to reach out and help other people. And you know it's that idea of pay it forward. I think cancer survivors are so good at paying it forward. They really they reach out their hands and they help people with new diagnoses and things like that. So I'm paying it forward I'm doing

what a lot of people do with their lives and and I don't think it's you know that unique. I think it's important that we dedicate our lives to this. One of the things that I was really really proud of is when an oncologist came up to me at a talk that I had given and he said you know Dr. Silver You made the research case for this. You made the business case for this but I'm going to do this because it's the right thing to do. And it is the right thing to do. Right Julie silver and Vader were pleased to meet you. Yeah I'm Cally Crossley we've been talking about new ways of treating cancer survivors with Dr. Julie silver Dr. Silver is an assistant professor at Harvard Medical School. She's on the medical staff at Massachusetts General Brigham and Women's and Spaulding Rehabilitation hospitals. She's also the founder of oncology rehab partners an innovative healthcare company breaking new ground in the field of cancer care. Thanks a lot. Thank you Carol. Up next we look at a new multimedia installation that takes on the media and raises

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call 8 8 8 9 7 9 4 2 4 at WGBH org. The American Dream is where we live continues next week with stories from Massachusetts towns economic realities are influencing the American dream. That's next week here on radio. Welcome back to the Calla Crossley Show there's a new multimedia exhibit called Anonymous Boston. It examines how the media cover urban violence and those killed by violent crime. Joining me in studio or Joanna Marr Vino maar maar and I'm going to get this right. Mari Nova Jones Gianna Moreno Jones the producer of anonymous bust and Mervo chambers she is the mirth mother of ival Brown with the age of 17 was fatally stabbed. She has been active in mothers for justice and equality since her son's death. Welcome to you both. Thank you.

Well let's start off John about it and describe what the what the multimedia exhibit looks like. And. It's really is as you said to me not Archie. It's you know I got a lot of words and some pictures but. But if you walk into the fourth wall project what do you see. So what I tried to do was to depict the humanity of the children whose lives we have lost so what you will see is big pictures of our lost ones our loved ones with their own writing whether with poetry or rhymes. And on the other side the family's comments. And that was meant to empower the families and give them a voice in their own history and their own story juxtaposed next to them are the anonymous comments that bloggers have left that are sort of victimizing the families. There's also a beautiful mural by the artist Thomas be quiet and photography by Ernest are all you. So the anonymous comes from the comments made by folks

responding to the news article describing the deaths of some of the young men are young persons on the wall and it's quite gripping actually to see the comments on the wall because it's just one after another and frankly Merv many of them are are not kind. None of them are kind here. As you as a mother of one of those people featured on the wall how did you respond to that when you just saw I mean you experienced his losing him is one thing but it's I have to say as a person just walking and it's very it's quite startling. It is. It's moving. It's very moving. When you first walk in and see the photos but then the comments that are written about your child when you lose a child and someone who writes the things they write about your child or about kids that are lost they are children. None of them deserve the way they're being treated none of them none of them deserve to die.

It's too much. And then for people. To really write those words just like you've been been victimized twice tells the story of how your son was killed. Brown who was 70. My son I will Brown. We lived in the matter and community and he was dressed for work. I remember that morning very clearly we had a nice long really long talk and he was very much into community work. He was an avid advocate for young people. I'm speaking in rallying and marching for youth jobs for funding for peace for youth peace. He extended a lot of the rallies not only attended but was a leader. Put a lot of the rallies together a lot of the marches and stuff. So he was very involved. And that morning

he was dressed for work he worked for Family Services of Greater Boston. He went next door said he had to go talk to the neighbor with his friend we all knew. We have lived there for nine years and he made it back with stab wounds to a stress I don't know what happened. And this is next door to where we live. He never made it he passed away. Now when he was killed one of the stories written about him said he was the twenty seventh homicide victim in 2010. But there was a comment made about how he had been a youth leader and and so many of the kids quoted were saying he's who we looked up to he was talking to us and helping us. So I'm thinking then that the other response by the anonymous bloggers as you said was doubly victimising because here is this kid who was

working in his community whom other kids were looking up to and trying to model themselves after and yet he was attacked for what. I don't know just being it seems. I honestly think he was just in the wrong place at the wrong time. He was dressed for work. He had minutes to leave the house to go to work and he had to go talk to his friend for whatever reason. He didn't say you just said you have to go see the neighbor or the neighbor or someone we know. I know he knows this is our neighbor. So I had no fear I had no concern at all at all. When you put together all these stories as I said it's quite powerful to walk into the gallery and see it all at once I think. You know if if you were a news consumer in Boston you may have seen one story or maybe two but all together. It's it's you know it

set you back on your heels. Yeah and that was a point. Absolutely nothing about this play is meant to make you feel comfortable. It's meant to make you feel and experience the loss that we face in our communities. It's about resisting this normalization of violence that we see every day. The word anonymous That's a double meaning yes the anonymous comments like you mentioned but also so many of the other children dying faceless and they have real messages and real stories that they brought in their life and it's about building that living monument their life isn't disposable Just because you live in a certain area code or you're of a certain race or whether you were involved in gangs or weren't. Your life matters and that's the message that we're trying to get across is the high price that we're paying as a community and that it needs to stop. And we all need to say enough. Well let me quote some of the from some of the bloggers or the comments. And as I said you know some of them were not not very kind you know.

This is one that you have in your press release animals this is what happens when you give animals everything for free and don't make them earn their livelihood from hard work. Instead they try to mimic what they see in the media and the movies in the end they merely proliferate violence amongst their own culture bringing it a step closer to extinction. Why don't we try defunding the urban underclass This is another comment. Maybe their reproductive rate will diminish and they will become less of a problem. Pouring money into generation after generation of these people via Wyck SSI food stamps Medicaid Section 8 housing etc. has not worked but one of the things that I thought was very powerful on the wall as well in addition to these kinds of comments was your comment that you wrote back and I just would like to to read that for all of our listeners to the anonymous blogger you write at the end of your blogging and they saying we still love and miss him. He had dreams goals and visions. If you are not part of the solution then you are

part of the problem. Did you get some response from people who saw those words on the wall and had a chance to think about that in relationship to the other kinds of comments. Some of the folks that were at the end and they thought it was very powerful and very moving. They they they just they said you know I had a lot of strength in me. But you have to from all of this you have to be strong strong for your kids strong for your child. They can no longer speak for themself. Do you think the media does a poor job overall in covering these stories so that it's as Jonna says makes the victims more anonymous in the way that the coverage happens. I think they could do a lot more or exactly happen

to humanize these kids and families to have compassion for families especially when you just lost a child. Not just any family member but your child. It's one of the worst things that could ever happen to me is one of the worst possible thing I've ever gone through. And I think the media can do a lot more by just even being human about it. How were you treated at the time of Ivo's death. It was so hard. It's it's like knowing I was going through so much at the time. I didn't even read a lot of what was because I was just not all there. I just just try to cope like every day. But after he died but then after months after when then you go back and you read the

stories and and but I think the media could really step up and do a lot more for families and victims. What kind of response are you getting from people who just come into the gallery and see and understand that this is a comment about media from both the families and the other artists who are involved in this exhibit drama. So it definitely depends on who is doing it and we know that and we've had incredible people come through like the Children's Museum Botham Medical Center non-profits organization just walk or by I think those that weren't educated to these issues they found it very informative very shocking and eye opening and my whole point with this is to awaken. Awaken the city of Boston to what's really happening back to what you are saying this is them versus us mentality that needs to stop. To others it was like a sigh of relief like finally somebody saying these things finally somebody is pointing these things out and shedding light on these issues. And violence is such a complicated issue. And my whole point is

that we all have to own it and my husband and I talk a lot about this you know from the prisons to the media to the failed school systems however you want to look at it it's such a complex topic that we have to really work together and the media's role one of informing and educated should be providing this in-depth analysis of the root causes rather than tearing down each individual family was more of a good mother you know that he come from a good home which doesn't really serve the community and in any real way. So what was your motivation for pulling it all together because unlike murder you don't have a sun on that wall who's been lost to violence so what for you was important about pulling this together. So a couple of things. My husband's son my stepson was murdered in 2008. And I saw the comments and the way then the media covered it and the impact it had on him by him having been such a great father and having worked so hard to protect his child and how was further victimizing them that was my first impression or my first interaction with the media in the Commons. Secondly I work with youth in the city of Boston and I see them

reading these papers reading these comments and really internalizing a lot of that hatred. A lot of that anger and not having the I don't think from maybe adults don't have the emotional maturity to process that in a healthy way. And that turns into self-hatred you start hating where you come from you don't see a future for yourself so on and so forth. So for me I really did it for the children that are left behind that are witnessing is violence and that are left to pick up the pieces. Well you know as a member of the media I have to say that if I were to speak to my colleagues about this they would say you know we probably haven't done the job the best job that we could do all the time. But coverage in general has gotten much better around these issues that we are really working to make certain that people know the histories the personal histories the families that these people are just not a number. How do you grade. Let me start with you. At this point it's years now since the death but these deaths are still a year OK. That's right. It's that's it's a law it's not a long time actually is I'm thinking in in total

of all the numbers of deaths that were there were trade on the wall. All of those years how would you grade the Boston media at this point. They're better. I wouldn't say they're better. OK so it's still it's they still have a lot of work to do. They have to remember when a child is murdered he sal and sees Connie's last and we have to remember that not every child you know was a bad child but whether or not. Whether or not I am pretty sure that each family every family that I met every mother that I spoke to that ever lost a child. I've never found one mother that did not love the child or did not work hard or did not do

everything in their power to raise their child. You know in the right way but it's happened and it's out there and it's happening. So Words can hurt if oh yes the stories are oh yes most definitely. Like I said is you feel it felt like. They were killing him all over again. So that hurt it hurts deep. Donna how would you grade the media and I should mention before you answer you do have a lawsuit filed against the US in the world and in general seven about another issue but still how would you grade the media. So first off I'm doubting not pointing fingers and I'm about the solution. I don't think there's anything more horrifying for reporters than to have to cover these events to show up at somebodies door with a camera and the most difficult of times so I understand. However I do think that the media sometimes tends to pick sides and to decide whether or not a child's life was valuable or he was a straight-A student therefore it's a great tremendous loss. Oh he was involved in gang activity therefore. Well it's to be expected. So I don't think it's the media's place

to pick sides but simply to provide a fair and accurate reporting and part of that is also highlighting the positive things that are happening in our community interest plenty of those but they're somehow end up in the media's blind spot. So tonight we're actually having a dialogue when we've invited all of the media and majority of them. Are going to be present at the table we're going to be presenting them with a set of guidelines on how they should covered these events. Some of them are moral suggestions others are very very practical suggestions and it's about building together and reaching an understanding that's going to better all of us because of the end of the day as you know. You know newsrooms are laying off staff newspapers are shut out what they're doing is not working. So how do you connect your community and reflect what's really happening. There's a couple things you you urged me to do if you're granted access to family members encourage subjects to have someone to support them during the interview and recognize that all cases are unique and one family might not mind being asked a question but others may. And there's more to that there's a whole host of activities tied to this multimedia project that will be going on to the

19th and so thank you both for coming in to talk about it. I really appreciate it. We've been talking about the multimedia exhibit anonymous Boston I've been speaking with Joe Hannah Marvin o Jones and the prince the producer of anonymous Boston and Murtha chambers. She's a mother of brown at the age of 17. He was fatally stabbed. She's been active in mothers for justice and equality since her son's death. Anonymous Boston runs through November 19th at the Fourth World warthe wall project and Boston's Kenmore Square. You can keep on top of the Calla Crossley Show at WGBH dot org slash Calla Crossley follow us on Twitter and become a fan of the Calla Crossley Show on Facebook. Today Show was engineered by Alan Mathis produced by Kelsey Myers will Rose lip and Abbey Ruzicka where production of WGBH Boston Public Radio.