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Good afternoon and welcome to Frankly Speaking About Cancer with the Cancer Support Community. Your host is Kim Thiboldeaux, President and CEO of the Cancer Support Community. This hour is designed to inspire, inform and to help you live better with cancer. Now, here is your host Kim Thiboldeaux.
Kim: Welcome to Frankly Speaking About Cancer, a podcast that focuses on informing and inspiring people to live well with cancer. I am Kim Thiboldeaux, CEO of the Cancer Support Community. The Wellness Community and Gilda's Club have united to become the Cancer Support Community, one of the largest providers of cancer support in the United States and around the world. Our services are offered at more than a hundred locations worldwide and online at www.CancerSupportCommunity.org.
There is a quote that sometimes attributed to Mark Twain or maybe Confucius that says, 'If you love what you do, you will never work a day in your life.' After meeting today's guest, ESPN reporter and cancer survivor, Holly Rowe, I think you will agree that the quote should be, 'If you love what you do, it is the best medicine for what ails you.' Let me tell you a little bit about Holly. She joined ESPN on a regular basis in 1998.
Holly primarily covers college football, men's basketball and softball as a reporter. As well as the NBA and WNBA. She has also provided play by play commentary for women's college basketball, softball, volleyball and gymnastics. In addition, she has covered soccer, swimming, track and field and the Little League World Series of baseball and softball for ESPN. She plays a role in ESPN coverage of the sports she works on. Previous to her tenure with ESPN, Holly provided play by play for women's college basketball and women's college volleyball for Fox Sports.
Holly is also an Emmy nominated producer and writer of documentaries and features that have aired on the BYUtv ESPN and Fox 13 TV in Salt Lake City. In 2015, Holly was diagnosed with Desmoplastic Melanoma, a rare form of skin cancer. She is still in treatment and is dedicated to educating others about the risks and the advancements in treatment. Welcome to the show, Holly.
Holly: Thank you so much for having me. This is so so wonderful.
Kim: Well, we were so pleased to have you at our gala in New York in April. It was such a treat and we had a great time with you and I was so glad that you agreed to come on to the show to talk to our listeners today. Before we jump into the meat of our discussion Holly, how are you doing?
Holly: I am doing great. I am in such a weird place because I mean I am currently in treatment. I have had a new tumor in my lung for the last year but the good news is I am doing well and I go every twenty one days and get infusions. You just kind of plug along and it is a little bit of a grind but I do not want to complain in any way because I am living longer with a tumor in my lung than many people have and I am just grateful for every opportunity I have to keep on going.
Kim: Terrific. Terrific, Holly. I think this next part of the discussion will maybe feel like you are giving your doctor your medical history part but I want our listeners to hear your story a little bit. Your cancer really is such a rare one and I want to make sure our listeners understand your diagnosis and sort of the context of your journey. Why don't you take us back in time, tell us what led you to seeking medical attention. What were your symptoms? What caused you concern?
Holly: Vanity, complete girl vanity because I had a suspicious mole on my chest and I went and got it biopsied and they said there was nothing wrong with it. I do not know, about a year and a half later, the scar where they had taken the biopsy just kept bubbling up and getting bigger and bigger kind of looking like a bigger suspicious mole and I did not do anything about it because I had the biopsy, they said it was nothing, I thought that was just a scar. I was wearing this beautiful evening gown as I hosted the Ohm's Rebel Award in Ohm's campus in 2015 and I had this beautiful sheer overlay dress on and this lump was popping up on my chest, just below my collarbone, in the dress.
I was like that is weird. That lump is a lot bigger than I thought, that mole is a lot bigger than I thought, or the scar or whatever it was. I went in to my dermatologist and said I would love to remove this, the scar has not healed right, can we cut this out? He is like looks weird, let us biopsy it. They did a biopsy and I was walking down the street in New York City, I had just been to a college football meeting for ESPN and he called me back and said it is cancer. I was like no, no. We just biopsied. I was just really so stunned. I stood in the TJ Maxx in New York City and I was like I will never be able to come in the TJ Maxx ever again which is devastating because it is a good one but I just could not believe it.
I did a surgery, they said they got the tumor, that they were clean borders, and so I really did not do anything aggressive. I did ask if I should get radiation or anything like that and they said no at that point because they felt like they had gotten clean margins. About six months later, they had done/taken lymph nodes from under my arm to test on if it had spread and if it had spread. But the scar where they had taken the lymph node did not heal right and again I just thought the scar was not healing right and it turned out to be a new tumor. It had spread just not in the time that we had caught it. I guess my biggest frustration throughout this entire process is that I never was alarmed. I never was like oh this has got to be something, I am going to go get it taken cared of right away.
I think back in horror like what if I had gone and gotten that what I thought was a scar checked six months before, maybe I would not be in that situation. I think that is one of the reasons I am really adamant about sharing my story is we all wait. Every one of us listening to this program has something suspicious that has been nagging at them that they have wondered and then they think oh it is probably nothing. I just cannot encourage people enough that the worst thing that could happen is that you go in and the doctor says oh it is nothing. The best thing is that you go in and they have caught something early that will prevent more serious issues down the road. Last August I found out I had, I had that surgically removed, and they kind had to take out my whole armpit which I have this lovely gorgeous new armpit that I really detest.
It is a whole another story, we do not have time for that story but it was hard. I had to have to use drains stitched into my side, I was trying to work on television with these drains stitched into my side. For six weeks, I had to have this little fluid pack where they are getting the fluid out of you. I am like if coaches that I am interviewing right now and in these games could see what is hanging around my neck, under my sweater right now, it was just so surreal . Try to work and be on TV with all this medical stuff in your body is just not your own. I look like a Cyborg I think but anyway then last August I got some bad news. I had another scan which was just a routine follow up scan after the surgery to make sure everything is going okay and I had one large tumor and I think three small ones in my lung.
I do not think I forget this, the nurse at the time, I overheard her say to somebody,' Well, she is lucky. This used to be a death sentence.' It just really resonated with me because I do not think I have understood this entire time just how deadly Melanoma is. If people can get one message from me today or two messages, it is get things checked out that you are wondering about and take everything very seriously because I did not know how deadly melanoma is and how quickly and ethically I do not even know if that is the word but it travels. It can go anywhere in your body once it is in your organs, in your bloodstream. Catching it before it reaches that layer is just crucial.
I am now in this clinical trial at the UCLA Medical Center and I cannot even say the name of the drug at Pembro is the nickname for it, but I am in a clinical trial and I am very lucky because I am getting great care. They are doing scans routinely and my tumor is shrinking. I had an interesting conversation with one of my doctors and he said every seven years oncologist have to go through and take these tests to make sure we are up on everything. He said when I took my test six years ago, not a single drug that I am using today to treat melanoma was available. I just think how lucky I am that in this day and age, when I happened to get a tumor in my lung there was a drug that had just recently become available that is making my tumor shrink.
I mean it is just overwhelming to me because there is a lot of people who have died from what I have got right now and right now I am hanging in and keeping strong and this new immunotherapy which is cutting edge research which is changing the face of how we treat cancer. Heck, it just might save my life and it was not even around years ago.
Kim: Yes, the rate of progress is really exponential these days which is certainly the great news for so many people who are being diagnosed, in fact thousands of people being diagnosed today. With cancer, certainly the news is better than ever. Holly, I know that on the immunotherapy drug that you are on, you are participating in a clinical trial. I know a lot of people have sort of skepticism about clinical trials. We always try to let folks know hey, look a trial maybe the best treatment option for you. Well, you should ask about it, you are not in all likelihood on a cancer treatment trial, you are not going to get a placebo, you are going to get treatment and again you are monitored very closely. Did you have any hesitation about a trial and how has it been being on a clinical trial?
Holly: I did not. I have been on two now. My first clinical trial I was on I got, there is that keyword they call it, where they put you on a path. I chosen for this path and I had to do high dose interferon which if anyone has done that it is just like devastating. I did thirty days interferon and it is literally the hardest thing I have ever been through in my life. What we know now is that that was not effective at all in stopping the spread of this. Why that clinical trial is important is that maybe for the next person coming down the road, they will realize hey, let us not put this next patient through that because we know it is not as effective as some of the other drugs out there.
I kind of look at this altruistically as my clinical trial information is going to help somebody behind me. A, I am getting great care. The cost is incredible because my I think my drug right now will be somewhere around $150000 to be taking this drug but I do not have to pay for it being on this clinical trial and that is saving my life financially. If you think about the impact that would have on me, have to pay for that. I really recommend clinical trials. I mean it is not scary, everything is laid out for you, you can leave it at any time in most of the clinical trials. I like to look at it as I hope that whatever I am going through is going to make the next person that is diagnosed or the next person as my same situation have a better experience, that is very important to me now.
Kim: Yes. Holly, we have got about a minute until our first break here. We are already digging in some deep topics but I heard a rumor that you walk up to complete strangers and tell them to power up from the sun. Is that true?
Holly: I have become the crazy sun lady and I cannot help myself because I work in sport and I see people sitting on the stand, particularly my college softball people, and they are out there just baking their skin and they think that suntans are good. The NCAA was so sweet. They let me do this whole public service thing at the college world series about covering up. I wish someone would have shaken me by the shoulders 20 years ago so I am not going through this today so I am trying to be that lady shaking you by the shoulders.
Kim: I think it is great advice. I was just at the beach last week and I was like a little old lady sitting under the umbrella with the cover up on in the sunscreen on and telling all my family cover up, cover up, cover up. I think we all have to responsibility for that role and those of us who know and just the fact that we are so aware these days that we have sunscreen and we have these things available to us that were not available to us when we were kids I think is really making some great progress.
We are talking today with Holly Rowe. She joined ESPN in 1998 and she covers a wide range of sports. She is battling cancer right now and she is here to tell us about her own cancer experience, talk about the importance of covering up and protection when it comes to melanoma and a whole host of other topics especially having cancer in the public eye. We are going to take a quick break here and we will return to frankly speaking about cancer.
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Opinions, options, answers. You are listening to VoiceAmerica Health and Wellness.
You are listening to Frankly Speaking About Cancer with the Cancer Support Community, an inspirational program offering the resources you need to live a better life with cancer.
Now, here is your host, Kim Thiboldeaux, President and CEO of the Cancer Support Community.
Kim: Welcome back to Frankly Speaking About Cancer. Today's episode is being brought to you in part by AstraZeneca and Lily Oncology. I am Kim Thiboldeaux and with us today is Holly Rowe. Holly is a highly respected sports reporter for ESPN. She is also a cancer survivor, still currently in treatment for Desmoplastic Melanoma, a rare form of skin cancer. Holly, I have noticed that you have taken as little time off as possible for your treatment. You talked in the last segment about being sort of on the field having drains in your body and just shortly post-surgery. You have said that your work is really the best possible therapy. What is it about sports and sports reporting that had such a positive impact?
Holly: Well, first of all I grew up kind of a tomboy and just loving sports, every single thing about sports. I am obsessed. As I have been going through this cancer battle, I had some colleagues that have also had cancer with ESPN and they have taken time off and that is wonderful. But I am the kind of person that I need goals, I need things to look to and so when I was first diagnosed I set a few goals like okay I want to get back by then or I need to be back by this time because I just know that my personality, that is how I respond the best, is having things in the horizon to shoot for.
I think that on the days that I am off and I am sitting around by myself in my house and putzing around, I think about having cancer and I worry about things and you are anxious and there is a lot that goes into this that you have no control over. That is a scary feeling, you are you are trying to plan your life and you have no control. The things that I can control is finding joy in everyday life and the things that bring me joy are going to games. Every game someone is winning or losing, someone is overcoming adversity and I just cannot even tell you how inspirational that is.
I was just sitting here in my hotel room, watching Wimbledon, and I am not working it, I am not involved, and I am just brought to tears by this woman Jo Konta, becomes the first British woman in 49 years to make it to the semifinals at Wimbledon and I am just in tears. Sports stories and people overcoming things have always touched me and I am just in this lucky position that I get to do it for a living. It has been one way to help keep me busy, keep my mind off of having cancer and all the scary stressful things that comes with that but it also gives me unbelievable joy every day I go to work.
Kim: Yes, that really is a sort of triumph human spirit element in sports, isn't there? There is so much to translate to the cancer experience. Were you always a sports fan? Were you an athlete before you became a reporter?
Holly: Yes, I was. My dad raised his girls like we went to sporting events. We love sports, we played every sport you can imagine and it just was such a part of the fabric of our family in our life. I still, my sisters, I will call my sisters like oh my gosh did you see that play or they are texting me about oh my God did you see what that quarterback did? It is part of our women's culture in our home which is unusual because I am 50, my older sister is 54, like that was not how women were back in the day. I have to really thank my dad, Del Rowe, for making us love sports because it has brought me a lot of joy in life. But you are right, I do learn stuff. I am interviewing and dealing with some of the greatest coaches of all time, Geno Auriemma, who has led UCon Women's Basketball to ten national championship.
They won a 111 games in a row, I mean this is one of the all-time greatest teams ever. To sit there and listen to him talk about overcoming adversity and what you do when you are down and how to be a better person through adversity. I still live speeches he is giving to his basketball players and apply them into my own life. I actually still... They gave me a little video that UCon players watch before every game about hustle plays and how to hassle and get the ball and keep the ball from getting stolen out of bounds and all this stuff. I watch that before I go into treatment because I am like I am going to go in there with the best fighting spirit and fighting attitude.
I am stealing a lot of these lessons from sports and using them to motivate myself in my life. Geno gave me a bottle of wine called Mt. Brave and the day I am free from cancer I am going to open up that Mt. Brave and have a great toast to Geno and some of the great lessons he has taught me.
Kim: Tell our listeners what that means, hustle plays?
Holly: Hustle, if you are not a sports person, it means you are diving on the ball on the ground to get a ball before it goes out of bounds. You are the player that is going to do everything you can to save the ball before it goes out of bounds or if there is a deflection you are going to kill that ball and go to the other end and score. It is going above and beyond the extra play or what is normal in basketball and making that hustle play the extra effort. I kind of love to live my life like that. Like I am a girl that lives on hustle plays in life. That helps me mentally as I am there, getting at my infusion and being at the hospital. On the days where I am a cancer patient, I try to have these really positive mental images of how I am fighting and what am I doing to be strong and how other people are helping me be strong.
Kim: Well, Holly, I grew up in Philadelphia with three brothers so need I say more about this. My mom, a few years back had a double knee replacement and she was coming out of surgery out of anesthesia. She opens her eyes and the first word she says to my dad are, 'Bert, did the Philly's win?
Holly: It is such a part of our life. It is passion, it is the winning and losing. It is just everything to me so I love it.
Kim: Yes. In Philly, certainly part of our local identity, that is for sure.
Holly: For sure.
Kim: Holly, I know that sideline reporter can be pretty physical. I mean I have heard you push pass crowds, you climbed over tables, you even held up exhausted players just to get the interview. What makes a good sideline reporter and what makes you a good sideline reporter?
Holly: Great question. I think that maybe some of that goes back to the hustle plays. You have to hustle. I mean the football field is big, you are covering two teams on each side, you have got to be moving. I had a security guy once that was with me so he went everywhere I did in a college football game and at the end of the night he had one of those FitBit or Apple watches on and he said wow we went six miles tonight. You do have to be in good shape and to be honest there were times last season I did struggle through the season because I just, it was so weird, I just had a lung biopsy eleven days before the college football season started last year. I did not really want to tell anyone because I did not want my bosses to worry about me or not let me work and so I was really nervous about working my first college football game because I just did not know what kind of shape I was in and how I would handle the heat. It was Notre Dame in Texas. It went into double overtime and I was dying but I was like I made it. If I can make it to this game, I can make it.
Week by week, I would just try to walk extra and get stronger and football is probably the most physically grueling of all the sports I do just because the size of the field and how I am trying to kind of hustle around from sideline to sideline. But again, having that goal of like I am going to be on the sidelines, I have to be there, I love this job, I do not want to give it up, that keeps me going. Like I have already started walking extra miles every day, I am trying to get my stamina and health up and everything because college football is about 50 days away right now and I want to be on the sidelines. I know it is going to take work to be there but I want to be there.
Kim: Holly, I know we talked to a lot of folks who they just do not want to talk about their cancer experience, they do not want to reveal it to their employer, maybe to their clients. You are a very public figure and not only are you dealing with the major employer in ESPN but you have got fans, you have got athletes, you have got coaches, why did you decide to be so public about your cancer experience?
Holly: It is really weird, I never consciously decided to be public about it. What happened was my boss had said to me, 'When you start missing games for this surgery, what do you want us to tell people?' I was like, nobody is going to care if I am missing games. I do not really think anything about it so I did not do anything. The day that I went in for surgery, I was in mine pre-op waiting room in my hospital gown with my behind flapping in the breeze and every single person that would come in to the room to talk to me about things or get me to sign papers or draw blood or whatever, they would say, 'Are you that Holly Rowe from ESPN?'
I was like that is weird, I did not think this would be a big deal for anybody. While I am sitting there, I texted our PR gal at ESPN and said hey I just wanted you to know I am having surgery today and I literally just texted her like a little paragraph because I started thinking maybe people were going to be more interested in that than I realized. When I woke up from surgery, I was in my hospital room, and they are going across the bottom line, it is like one of the scrolls that CNN does at the bottom with breaking news, was Holly Rowe had surgery. I was like oh my gosh, oh no, oh my gosh, oh my gosh.
Sometimes you do not always control your story or realize exactly how it is going to spread so I did not go in thinking I would be public about it but in retrospect I think everything has happened exactly the way it should have because I have gotten a ton of support from coaches and players and people that I worked with that has been amazing and has uplifted me. But secondly it has allowed me a platform or kind of an opportunity to tell other people about what is happening because if we do not talk about this, we are not helping anyone.
I wish someone would have told me three years ago, four years ago, five years ago, melanoma is serious. At the very first moment you have got to go after it, you have got to be aggressive. I wish I knew more about melanoma going into this and people could have done that for me. I always go out and like I hope that I am not sharing too much information. People are going to think it is gross to hear about your drains, or your armpit or whatever but I think that being real is important. I think being honest and letting people know what challenges you are going through and what you are overcoming, if that can help someone else, that is huge.
Kim: Yes, absolutely. Absolutely, Holly. We have got a quick minute until the break but were you ever, because you are so public, were you ever sort of worried about oh my gosh what am I going to look like, what is my treatment going to be, is it going to affect my appearance?
Holly: Gosh.
Kim: Yes.
Holly: I might need to save this for after the break because it is a funny little story. My hair came out and I was bald for my first college football game and so I was wearing a wig. The very first college football game practiced I go to, it is a 106 degrees and I decide not to wear the wig to practice because I am not going to be on camera. Matthew McConaughey is at the Texas Football practice and I meet Matthew. He gives me a hug, a kiss on the cheek, and I am bald. I am like well, there is my life. Summed up in this one moment like if it is going to be something ridiculously funny. Here it is.
Kim: You could not write that, that is hysterical. This is Frankly Speaking About Cancer. We are talking with Holly Rowe, ESPN reporter and cancer survivor. We are going to take a quick break. This is frankly speaking about cancer. Do not go away, we will be right back. We have got a lot more to discuss with holly.
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Your life, your health, your network. You are listening to VoiceAmerica Health and Wellness.
You are listening to Frankly Speaking About Cancer with the cancer support community, an inspirational program offering the resources you need to live a better life with cancer.
Now, here is your host, Kim Thiboldeaux, President and CEO of the Cancer Support Community.
Kim: Welcome back to Frankly Speaking About Cancer. Today's episode is brought to you in part by Inside Corporation, Novocure and Taiho Oncology. I am Kim Thiboldeaux and our guest today is ESPN reporter and cancer survivor Holly Rowe. She has covered college basketball, football, volleyball, gymnastics, softball, swimming, track and field, and the Little League World Series and the Women's World Cup. It is no understatement to say she is beloved by the sports world and sports fans alike. Holly, you talked a little bit about the fact that you sort of went into surgery, not really thinking about how you wanted to share your own cancer story and woke up from your surgery and there you are on ESPN sharing that. Were you prepared for that? Did it feel like a relief to you? Were you a little bit nervous about what the impact could be?
Holly: It all happened so fast that I did not have time to think about it too much because there it is going across the bottom line and when I woke up from surgery I think I had something like 284, 384 text messages. It did cause a big reaction but it was really beautiful. I do not think I understood the impact maybe I have had in my career and other people, I do not want to cry about it but it was really cool.
Kim: That is awesome, that is awesome, Holly. I read in another article, Holly, the team gave you their office to use to rest and recover when you were in town covering a game which is just so thoughtful. I mean there have to be there have been so many moments over these years that have really surprised you in terms of the magnitude of the support hearing from your fans, knowing that you have this incredible fan base. Has that really helped to kind of raise you up in this journey?
Holly: It has and they have just been these really beautiful private kind of sweet moments like a few that have meant a lot to me. I am doing the Women's College World Series last year and I was just coming off that 30 day stretch of hard chemo and I did not feel great but I wanted to be there. The Oklahoma Sooners Team had a big sign for me in their dugout and their athletic trainer had my own little bottle of Gatorade with my name written on it and the coach, Patty Gasso, would come and hand me the bottle before the game and be like we want you to be drinking and make sure you are okay. I am like here is this woman trying to win the national championship and she is worried about me, that is precious.
I have tried to walk this line of, it is hard because I am supposed to be being an objective journalist and not getting emotionally tied to these teams, but it has meant a lot to me that they view me as kind of part of their family and that I am one of them and that they are going to support me. Just so many really precious kind moments like that that just means the world to me. The Washington Huskies was the ones that let me use their locker room and they said see you in Oklahoma City and sure enough they made it to Oklahoma City and I did get to see them there for the World Series.
The Utah softball team, the UCLA softball team has come and visited me at my home before my treatments. I hate to leave anyone out. The Kansas basketball team has been so sweet to me, the Iowa State Basketball Team, the men's team. But so many people have just done small kind thoughtful little things and that is something else outside I would want to pass on to people who are listening is sometimes when someone close to you get cancer, you feel kind of overwhelmed like I do not really know what to do. I cannot control your treatments, I cannot control how you are feeling, but what I meant the most to me and what I have continued to try to do to other people around me who have been diagnosed with cancer, is small thoughtful kind gestures. They mean the world, they mean the world. Someone driving me to treatment, someone offering to come sit by me at treatment, just little small things just build up and make a big difference.
Kim: I think that is going advice, Holly, for our listeners because a lot of folks say I just do not know what to do and I am afraid to do the wrong thing or I am afraid to say the wrong thing. I have heard patients and survivors say look you can say the wrong thing. Just reach out, just be in touch. I have also heard folks say that they are surprised by who has not reached out as they are by who has reached out.
Holly: It is true.
Kim: Yes.
Holly: It is true. Since I have been going through this and saw how kind and lovely and wonderful people have been to me, I have been a better friend to other people. I have had two or three good friends diagnosed with cancer since I was and so it is my mission in life to be the person that is there and thoughtful and thinking of them and send flowers or send a card or be that thoughtful friend because I have realized how much it means. It does not have to be expensive or cost money. It can just be small thoughtful gestures, that is what I hope to do for the rest of my life is be thoughtful and kind to other people who are going through this because it is hard, it is really hard.
Kim: Yes, yes. Have you ever thought to yourself, 'Man, this is too much?' Balance work, balancing travel, being in the public eye, dealing with treatment, dealing with clinical trials, what keeps you going and what do you do to kind of relax and step back a little bit?
Holly: Well, I am ridiculous. I go to games. When I am not working games, I go to games. I know, I am so ridiculous. Like on my days off I was there at the LA Sparks game just because I love their team. I go to games but that is such a great question. I am almost embarrassed to tell the story but I want to because last week I had an infusion, I had treatments. I had to go to the hospital at seven in the morning, it is a day after the 4th of July. Seven in the morning I am at the hospital, I am getting my labs drawn, they can only draw labs in one arm because my other arm all my lymph nodes are gone so it is always a struggle to find a vein and they are digging around in your arm and I was just feeling sorry for myself, it is not like you are having cancer.
Well, in comes this little man who is maybe late 60's but he is on a scooter because his back, he has kind of got scoliosis in his back and it is bent over and he has got a broken arm and then he is wheeling in to get his labs drawn because he has also got cancer. I just started crying. I was like stop feeling sorry for yourself. You are a healthy strong woman who can handle this. There are so many people that can handle it. Think about what is going right instead of what is going on. It was just like wow I feel so bad that I got down because there is so many other people that have a much much worse. I am trying to really focus on okay this is hard but I am doing great, I am doing well, I am going to make it through this. How can I help lift up other people?
Kim: Yes. Holly, I know that The V Foundation has been very helpful to you and my friend Susan Braun is the head of that foundation.
Holly: Oh, I love her.
Kim: Can you tell our listeners who they are and what they do and how they helped you?
Holly: Yes, it is really important to me. This week is V Foundation on the ESPYS which people probably will watch on TV on July 12th. The V Foundation is actually involved in so many things. When I got cancer, my friends said I am going to put you in touch with Susan Braun and she got me an appointment. They actually scheduled my appointment with this melanoma specialist, Antonio Ribas at UCLA Med Center. He is one of the top melanoma doctors in the country. The V Foundation got my doctor's appointment and that is no small thing to me because he is busy, he is one of the most busy doctors in the country, and that he would see me and take me on as a patient has meant the world to me.
They are a hands on, they are funding research, they are funding doctors. The V foundation is huge and this would be a very special week if people wanted to reach out and learn more about that at The V Foundation on Twitter. They are just so so worthy of what the work they are doing and I mean I cannot put it too simply. They are there helping save my life by getting me into this doctor, into this clinical trial that is shrinking my tumor. I mean that is black and white.
Kim: Yes. They are a great group and Susan is a terrific lady and I have been honored to know her for many many years. I am really really glad to hear that. How do I know that, obviously, the treatment, the path you are on, you have had your ups, you have had your downs, a lot of things changed, future is uncertain, how do you go about sort of each day? How do you think about sort of short term and long term in your life?
Holly: That is such a good question because it is a constant battle I think that you are fighting as a cancer patient. I think sometimes you pretend you do not have it and you do not think about it and you just keep going about life and then you find yourself like why am I caught up being worried and stressed about life and work and insurance and all this stuff when I need to be enjoying every day. It is this weird balance. I just had this epiphany a couple months ago that all I can control today is to wake up and find joy. If there is going to be something today that is going to bring me to tears, that is going to make me laugh my guts out, that I am just going to be like that is a special moment and
I am going to live for these moments every day. I started keeping a little joy Journal. My joy stand for just open your heart and just open yourself to whatever your experience is going to be that day. I am keeping my journal, every single day I write down what my joy moments were, and then I go back and look at it and I am like oh I forgot what a great moment that was. That was so special and so it is keeping me kind of centered in the present, enjoying every single second of beautiful opportunity that I am getting in my life and keeping the fear and the anxiety about what is next in the unknown at bay.
Kim: In terms of the trial that you are on now, tell our listeners just for a moment before we go to our break here, about the trial. How often do you go, is the medication you are taking is it oral or IV or are they getting scans done?
Holly: It is Keytruda. You might have seen commercials happening now on TV. This drug is kind of getting bigger and better. Pembro, I just cannot ever say it right. Pembro, something like that.
Kim: I think that is detectable so yes.
Holly: I go every 21 days and have an infusion. It is like a chemo infusion. You go in, kind of sit in a lazy boy chair and they hook you up to an IV. It takes about an hour total and then every six or nine weeks, I am getting scanned. I will have a CT scan in two weeks that will let me know what size the tumors are. It is good and it is bad because I have seen absolute shrinking and movement in the tumor and so that for me, being a goal oriented person, I love that. I am like let us go tumor, get out of here. I imagine it breaking it up what not and chopping it up. I am like let us get out of here. It is funny but there are some funny side effects. Itching and skin rash is one of the side effects. I wish I could tell you I am joking but I am not.
I have a little oyster fork in my bag right now that I stole from Parrains restaurant in Baton Rouge, Louisiana, one day I will pay them back, and I keep this little oyster fork and just itch myself everywhere and I am just laughing. I am like if people really knew. Like they see you on TV as a sports reporter but if they really knew all the stuff you are going through whether it is the drain, the new armpit, or the shaved head or the skin rash, like behind the scenes stuff you are going through is pretty hilarious. I try to snap out of it because otherwise I will cry.
Kim: I love that you are so open about it, Holly. I really do. We are going to just jump to a quick break here. We have got more to cover with Holly and Holly I want to jump into the melanoma topic after our break. This is Frankly Speaking About Cancer. Do not go away, we will be right back.
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You are listening to Frankly Speaking About Cancer with the cancer support community, an inspirational program offering the resources you need to live a better life with cancer.
Now, here is your host, Kim Thiboldeaux, President and CEO of the Cancer Support Community.
Kim: You are listening to Frankly Speaking About Cancer. Today's episode is brought to you in part by Bristol-Myers Squibb, Celgene Corporation, EMD Serono and the Takeda Oncology. I am Kim Thiboldeaux. We have been having a great conversation today with Holly Rowe. She is a highly admired sports reporter and Emmy nominated producer and writer of documentaries and features. In 2015, she announced that she had been diagnosed with Desmoplastic Melanoma. She is committed to raising awareness of this rare form of skin cancer.
Holly, I just I am going to take a moment to share with our listeners just a couple of statistics about melanoma. Although only 1%, a skin cancer cases due to melanoma, it is responsible for the majority of cancer deaths. About 9000 every year. Cases of melanoma doubled between 1982 and 2011. Over 90% of melanoma skin cancers are due to sun exposure. According to the CDC, the Centers for Disease Control, 20% of new melanoma cases could be prevented with comprehensive skin cancer prevention programs. Holly, I know you are really committed to raising awareness, to educating people about the importance of that skin protection. Prior to your diagnosis, what did about melanoma? How steep is your learning curve and how are you using that knowledge now to educate others?
Holly: Well, it came from an area where we would play out in the backyard on tin foil with baby oil. Yes, awkward. We like the tanning beds and sit right on the tanning bed may cause cancer but of course you never think that is going to happen to you. I guess you live in a state of denial while you are young because you have got this young beautiful healthy skin, not realizing it is the only skin you get and the damage you are doing is sub-dermal, it is lower layers, but then come out as you age. I am going to drop a couple more statistics on you because I think they are shocking. Melanoma is the number two cause of death between ages 18 and 35 for young women right now. Just think about that, young women, 18 to 35.
They should be invincible and melanoma is killing them in record numbers and it is because of sun exposure. It is because we think we are going to be the lucky one that does not get skin cancer. I just cannot strongly enough encourage whether you believe in global warming or not, what you should believe in is that our ozone layer is thinner and the sun is stronger. Actually the government just declared the sun a carcinogen because it is so strong and deadly right now that it is a factor. I sit in my oncology waiting room and I hope this is not too graphic but I do want to scare people a little bit of I am sitting in the waiting room and a man will walk and the whole side of his head gone like he had melanoma on his ear because we never think to put sunscreen on our ears and then it has gone to his brain and it is on top his cheek bone.
I met a man who had a lip transplant, I met a man who did not have his nose. He was wearing like a nose patch because his nose is gone because he had melanoma on his nose. Like I just cannot tell people how important it is to wear hats, put sunscreen on the top of your ears, the top of your scalp, the back of your neck. If we can prevent even one case of melanoma from people listening to this and being like, 'Oh my gosh. Holley Rowe scared the heck out of me and I hope we do because we just think it is never going to happen to us and I was just like that. I was just going to suntan and be more worried about my tan and nothing I have gone through to this cancer treatment, all the surgeries, all the chemo, all the stress , no tan in my life is worth it. I just cannot be more stringent enough about to cover up in the sun.
Kim: Yes. I remember when I was a kid we used to get a sunburn in the part of our hair. We have had two braids and we would get sunburn and would look like dandruff because we would be peeling in the part of our hair.
Holly: Yes. One last statistic, it is one blistering sunburn in your childhood before you are 15, increases your chances for melanoma 50%. One blistering sunburn. I remember the doctor saying how many blistering sunburns have you had in your life? I was like oh...
Kim: Too many accounts.
Holly: Yes.
Kim: Yes, me too. Too many to count, too many to count. Holly, I know we are talking here about prevention but I know you are also a great advocate for detection. What do you want our listeners to know about detection?
Holly: I know that there is going to be someone listening to this that has that thing that they have been waiting to see what happens like oh that one thing on my back or that one thing on my leg, I was not sure about it, one thing that looks. Go, get it checked out. When in doubt, check it out because we just never know. It might not be melanoma but it might be Basal cell, it might be squamous. There is a lot of skin cancers right now and so I think we all sit around like oh it is nothing. Well, sometimes it is something and it is pretty big.
Kim: Yes, yes, yes. I think that is great advice. Holly, we are getting to the end of our end of our show here. You have just been so upbeat and positive and full of zest for life but you have also publicly admitted to feeling fear, feeling uncertainty, feeling vulnerable, what is your message today to our listeners who are facing a cancer diagnosis?
Holly: Find what makes you positive and joyful and live in those moments. I would really recommend just wake up and find a joyful moment today and document it because the overall anxiety and stress of living with cancer can tear you down and maybe it is not the cancer that gets to you it is the depression or it is the anxiety or the stress. There is a way to be stronger than the fear and I do not always live in it, I have my moments of being afraid but I find a way back to the joyful place whether it is things that I get to look forward to.
I am in Seattle today, I am going to go out on a shoot with Sue bird and Breanna Stewart, two WNBA stars. They are going to show me around Seattle. That is so joyful and I am so glad that I am not letting cancer prevent me from sharing moments like this. Being at games and doing what I love. Try and all the sayings in the bracelets, I sometimes frustrated like how outright we treat cancer but it is a fight. Like you have to get up every day and decide to be better than it and not let it control your life and it is hard. I I do not want to sound preachy, I know it is hard, that get up every day and find something that makes you joyful and live in the joy.
Kim: For our listeners, Holly, who have that spot or have that lump for have that concern. They say well it is going to go away, I just do not want to just want to deal with it. What do you say to them?
Holly: Go get it checked because every day I think about what if I had got in sooner, what if that one spot on my chest I had gone in sooner, I would not be fighting for my life right now. Just think about that. If I had not procrastinated, my life would not be on the line right now and that makes me sick to my stomach and I get it checked. I just cannot tell you enough of anything suspicious. Get it checked.
Kim: Yes, yes. I think that is great advice and we really try to let folks know that that early detection is so key in potentially being cured and living longer. We certainly encourage folks to get in there and really listen to your body and do not be afraid of that. I can personally say that in the past two or three years, I have had about seventeen things removed from my skin and all have been sent off to the lab. You have got to get in there and just get it done. It is not fun but...
Holly: Because it is easy if you get it early. That way, if you get it when it is just on your skin, you are home free. It is when it moves to your organs or moves inside your body, that that is what procrastination does.
Kim: That is it, that is it. Holly Rowe, it has been such a pleasure having you on our show today and such a pleasure getting to know you and spending time with you at the Cancer Support Community. We love having you as a friend of our organization. I want to let our listeners know that if you are dealing with a cancer diagnosis, you do not have to face cancer alone. We have a whole host of in person online and telephone support programs and education for you. We have 47 centers around the country for people with all cancers at any stage of disease and for their family members and loved ones. We have education, support groups, exercise nutrition, visit us at cancersupportcommunity.org to see a list of our centers or you could call right now and talk to one of our counselors at 888-793-9355. We appreciate you joining us today. This is Frankly Speaking About Cancer. Until next time, be well, do well, live well.
Thank you for joining us for Frankly Speaking About Cancer with your host, Kim Thiboldeaux. We are here for you every Tuesday afternoon at 1PM Pacific Time and 4PM Eastern Time on the VoiceAmerica Health and Wellness Network. In the meantime, stay connected online at CancerSupportCommunity.org. That is CancerSupportCommunity.org.