This is the interview with Jennifer Jones and Jamie Hyslope, about surviving breast cancer, on Monday Night Radio. Monday Night Radio is an online (Internet-based) talk radio show where different experts are interviewed, and people around the world can listen via the Internet, and call in to talk with the expert, and ask them questions.
The Internet Patrol’s Anne P. Mitchell, Esq., is the host of Monday Night Radio.
This Monday Night Radio show with Jennifer and Jamie was first aired on 10/11/10. In addition to reading the interview below, you can listen to the recorded show via iTunes – where you can also subscribe to the podcast of all of the recorded shows. Here is the iTunes link: [destination content has been removed at other end :~( ].
At the end of the interview you will find links to products and services related to breast cancer that listeners and invited guests provided.
Male: You’re listening to Now You Know, talk radio where you get to ask the questions. Call us now 877NYKRADIO. That’s 8776957234. And now, Anne Mitchell.
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Anne: Welcome back to blog talk radio. This is the second half of our show. We are talking with two women who have survived breast cancer. They are going to talk to you about just about everything. What it is like to go through having breast cancer, and the different types of things to which they have been exposed, and what has gone on in their minds, etc. But, first I just want to take a moment to do a sound check. Can you all hear me out there? We had an interesting glitch in trying to do a back to back show and I am very sorry about that, but it is something special that we have been doing. So, it is a first for us. In fact, it turns out it may have been a first for Blog Talk Radio as well. Thank you very much. In any event, we have with us two breast cancer survivors. As I said they are going to talk to us about really what it is like to be on that journey. For many of us all we really think about anymore when we think about breast cancer if we have not had a personal experience with it is pink ribbons and races and while those are wonderful things and we certainly are grateful to these organizations that are raising so much money for breast cancer research. We think it adds a gloss to the reality, to the nitty gritty of going through having breast cancer. So, that is why we have asked these two women to come on as our guests. We will bring them on in a minute. Let me just tell you a little bit about them. Our first guest is Jennifer Jones and she is a mother of four children. As she says she kind of figured that she wasn’t really ever going to have to worry about breast cancer. She breast fed all of them and the conventional wisdom is that nursing your children helps to immunize you if you will against breast cancer if you will. It wasn’t something that was on her radar at all for any reason. Lo and behold one day all of the sudden she found that lump, and it was really just out of the blue. So, she is here with us. Then, our other guest is Jamie Hyslope. I hope I am saying her name right. Jamie, if not please correct me as soon as I bring you on. She first learned that she had an aggressive stage four breast cancer that had already spread to her liver and lungs a little over two years ago. She was given a very short prognosis. I believe about six months. So, happily she has already outlasted that. But, she has been through a huge number of treatments and she is now in remission. Again these two women are going to talk to you about the nitty gritty, what it’s really like. It may be shocking at times. It may make you uncomfortable, but I think ultimately it will make you grateful. You will be deeply moved. It will help you to understand what any friends and family you may have who are going through this or who have gone through it, or god forbid may still have yet to go through it. It will really help you to understand the reality of what this is about. So, I am going to bring Jennifer on first, simply because she is the first in the queue. Hang on there, Jamie, because we will bring you on very shortly thereafter. First of all, Jennifer, are you there? Hello, Jennifer? Let me try this again. Jennifer, are you there?
Jennifer: Yes, I am.
Anne: Hi, Jennifer. Welcome to Monday Night Radio. Thank you for joining us.
Jennifer: Thanks for having me.
Anne: Now, I have to in the spirit of full disclosure which we learned in our first segment is a very important thing to do. I do have to disclose that you are not only local to me, but you are a friend. So, I very much appreciate you coming on and doing this show. Well, that is pretty much what I have to say about that. Do you want to give us just a little bit of background about your situation? Just for a couple of minutes because we want to get Jamie on here too. We want to let people ask questions. Can you just sort of tell us a little about your background and your opening thoughts?
Jennifer: Sure. Like you said in the introduction, I really never thought I would have to encounter breast cancer in my life. I did have a couple of aunts that had it, but they were on my father’s side. So, I thought that that wasn’t a factor. Although, I’ve learned that indeed it is. Heredity can be passed on through the mother or the father’s side. Like you said, I did breast feed my children. I started having babies when I was 25. I really didn’t have it on my radar screen. One day I just flipped off my bra and felt a pretty big lump near my armpit. I thought, “Oh my gosh. How did I miss that?” Well then the journey began there.
Anne: Ok. Ok. Well let’s bring Jamie in. Let’s see where she is. Oops, sorry about that, Jamie. Jamie, are you there?
Jamie: I am.
Anne: Oh, Jamie, thank you so much for joining us. I know it was a little bit last minute. Or, at least it seemed that way on our end. So, I am very grateful for your joining us.
Jamie: Thank you for having me.
Anne: Our pleasure. Please, do you want a little bit of background? You heard what Jen had to say, and just sort of set the stage for our listeners.
Jamie: Oh, sure. Sure. In July of 2008, I was wrestling on the floor with my nephew and found a lump in my right breast. It was roughly the size of a grape. I didn’t think I had anything to worry about. Even my primary care physician assumed it was nothing, maybe a swollen duct. He started me on a heavy dose of antibiotics and ten days later it was still there, still growing. I ended up going through a mammogram and an ultrasound, straight over to a surgeon. Three weeks later from the date that I found the lump it had grown from the size of a grape to the size of a tennis ball. So, I was immediately in, had the lump removed. The surgeon came out, told my family, “Nothing to worry about. This is not cancer.” The reports came back a couple of days later that it was definitely cancer. So, they had to go back in and do a mastectomy. I started on chemo right away. After six months of chemo, we found out two days after Christmas that the cancer had metastasized to both my lungs and my liver. At that point I had three dozen tumors in my lungs and a softball sized mass growing on my liver with several smaller nodes scattering around it. My oncologist basically handed me a prescription for paid medicine and said you have six months to a year, but I can keep you comfortable. There began my journey with the Cancer Treatment Centers of America. Sunday I just celebrated 8 and half months in remission.
Anne: Well, congratulations. Both of you seem to have in common and correct me if I’m wrong, you know I will tell you right now I am very ignorant about most of this process, but that’s why we are doing this particular show, because many people are. We really only see what we see in the media. It seems to me that both of you, Jennifer and Jamie, went kind of from zero to sixty in a very short period of time, from nothing being there to suddenly having just a really large lump. Is that what it was really like?
Jamie: It seemed, it seemed that way.
Anne: Jennifer, how about you?
Jennifer: Well yeah, the lump that I had, Anne, actually was benign. It was just what got me into the office. When they were probing around in there with a needle biopsy, they found what is called LCIS, which is also a pretty benign condition. LCIS stands for Lobular carcinoma in situ. That’s just kind of an indicator that breast cancer is possible or it could be likely in the future. So, in doing a needle biopsy on the benign tumor, they found a little bit of that LCIS. So, then I was brought in for an MRI. On the MRI it showed what is called micro calcifications and dense tissue. That indicates breast cancer. So, at that point they did an actual removal of the whole site where the lump was and what was indicated on the MRI, all that came back that it was cancer. So, the lump that I had, it really did seem to appear overnight. I had no idea that it was there. It was in a part of my underarm that is hard to find. If you are doing a breast exam it really is important to raise up your arm and really feel up into the underarm area. Because the breast tissue goes all the way up there and up to your collar bone. Yeah, so what I found is once there is anything abnormal on your mammogram you are entered into a race. You are in the system and the doctors’ jobs, their mission is to keep you alive or well or comfortable. Instantly you are entered into that race. Yep, you just keep going back for appointment after appointment, surgery after surgery, whatever until they figure it out.
Anne: Jamie, what was your experience? Again, it sounded like it grew several folds within the space of a few weeks.
Jamie: It did actually. It was like I said the size of a grape when I originally found the mass. It was three weeks to the date that I went in to the surgeon for actual removal. He did do a biopsy. The biopsy was coming back inconclusive. It was such a hard mass that the biopsy needle was bouncing off and he just wasn’t getting a good enough sample. That’s when he said, “It’s continuing to grow, so we really need to remove it anyhow.” When he went in to remove it, it had gone from the size of a grape to the size of a tennis ball in three weeks.
Anne: Wow. That is just phenomenal that it could it be like that. We have some callers on the lines already. What I want to tell you is that we have several people who we know will be calling in who are not only survivors but who through their journey have developed either a product or service that they wish that they had had. They have since gone on to develop for other people going through the journey behind them. So, we will be hearing from some of them as well. But, for now first let’s go to Rhonda, well I’m not sure where she is. She can tell us where she is calling from. Rhonda, hi. You are on the air with Jennifer and Jamie.
Caller #1: Hi, Jennifer. Hi, Jamie. Hi, Anne. How are you?
Anne: I’m well thank you.
Caller #1: I’m great. I’m calling from Washington, D.C.
Anne: What did you want to say? Great.
Caller #1: I am…I also was diagnosed with breast cancer last year. I finished treatment in January of this year. My story is a little different. I was diagnosed before the age of forty. I’m single. I’m not married. I don’t have any children. I had awesome support through family and friends. My diagnosis was actually triple negative breast cancer, so it was invasive ductile carcinomas. So, from the time that I found the lump myself and started treatment it was probably the span of three weeks. So, from the time I found it, had the biopsy, I was being prepped in surgery, started chemo three weeks later. I did eight weeks of chemo, had a lumpectomy, and 32 rounds of radiation.
Jamie: Mine’s also a triple negative.
Caller #1: Wow.
Anne: So, what would you say people out there listening who may be supporting loved ones? You said you didn’t really have a family there, but you did have support. I’m guessing from you saying that, that that was very important. So, what would you say to the people out there finding themselves in the position of supporting someone who is currently going through this journey?
Caller #1: Well actually my family was very supportive. We just don’t live in the same state, but my family was extremely supportive. But, I also have a family of friends who were hanging in there with me. What I would say just from my loved ones that I was surrounded with, I think it is important to have the same mind set as the person who is actually diagnosed. So, in other words, not have the gloomy, doomy, “Oh, my goodness” kind of reaction if that person is to be a fighter, than you have to be a fighter.
Anne: So, you are saying be positive.
Caller #1: You’ve got to be positive. It may sound very cliché, but that is where the battle starts. It starts in your mind set. That’s one thing that my mother always instilled n me growing up. What ever you set your mind to do, you can do. I kind of carried that with me. I think it is important to remember that you are still empowered no matter what all the tests and all the things that the doctors tell you. You are absolutely right the doctors are there to help you survive, but I think at the same time you have to be willing to fight. As hard as it may be, as tired as you are because there were definitely days that I didn’t have the energy to do anything, but I still had to look at this thing like either I’m going to let cancer beat me or I’m going to beat it. So, I think that has to be your mind set.
Anne: Well, thank you very much for the call, Rhonda. I appreciate it, and I am sure that Jennifer and Jamie do as well. Jennifer and Jamie, let’s go with Jamie first this time. What was the most important thing for you in terms of support from those around you? Just before you answer that, let me remind our listeners that you can call in with your questions at 866Monday6. That’s 866Monday6. Or, you can also Skype in, and you can do that right through the website at mondaynightradio.com. You can send us comments and questions by Twitter to the Twitter address @mondayradio. You can e-mail your comments to email@example.com. Now that I’ve gotten that out of the way, Jamie, tell us what has been important to you in terms of support.
Jamie: Definitely a strong family and friends network. When I found out that the cancer had spread, it was two days after Christmas, and I sent both of my daughters to my parents’ house and I spent the weekend writing letters to each of them for birthdays, the day they get their driver’s license, prom, their weddings, all of these milestones that I was sure I was going to miss. I had really hit rock bottom. I had no hope. I didn’t see any hope in sight. I was pretty convinced that I was on borrowed time. Honestly, my friends were amazing. They kept me up, kept my spirits up. My family, my daughters, they were all amazing. The real turning point for me was actually when I started out with my new treatment at the Cancer Treatment Centers. They hooked me up with a mind and body therapist who just let me talk. He just let me air it all out. If I needed to cry, I could cry. If I needed to shout, I could shout. Once I got through that, I realized I had a whole team of people on my side. We started working and having to rebuild that. Once I got my spirits back up and I saw that there was hope and I had a whole team of doctors and people willing to walk in front of me and show me the way, beside me if they needed to, and sometimes they even had to be behind me pushing me. If that is what it took, but I couldn’t have done it without every single one of them. I really had an amazing support network. I really couldn’t have done it without them.
Anne: Jennifer, what about you? What would you say is the most important thing in terms of support that you have had provided or that you would know to provide to someone else in the same situation?
Jennifer: Um, well my situation, having four kids, it was really important that someone else take care of their needs so that I could take care of myself and just get the rest that I needed. I am blessed with a community that is wonderful about providing meals and any other needs that my family or my kids had. I didn’t have to worry about that. I could just really focus on my rest and my healing. That’s the physical part. The spiritual and the emotional support is what is really important and what is ongoing for me especially right not. Just healing the factors that contributed to the cancer in the first place, that is just uncovering all the emotional wounds that hadn’t been healed throughout my life. So, someone to talk to, someone to talk to, someone who just listens and just holds that space for my emotional healing, that is very important. Also, I got hooked up with our local cancer center, and they have a breast cancer survivors group. It’s a group of women at various stages of their diagnosis or treatment that get together and we can talk the nitty gritty together, just honestly, openly. We all have different experiences, different kinds of cancer, different kinds of treatments, but there are things that we can really relate to with one another, and just be real with one another. So, that has been just really incredibly helpful too. Just having friends that are comfortable with, when they ask me how am I doing, and I cry, that are ok with just giving me a hug, being ok with that and not trying to fix me. Not trying to give me another book, or another website, this is the cure for cancer; eat 50 green grapes a day and 20 ounces of artichoke juice or whatever. I understand the intention behind that, the love and the concern and wanting to help, but what really helps especially at the early stage is just some love, some holding.
Anne: Now, Jamie, you are chuckling, so has someone has recommended that you drink 20 ounces of artichoke juice? What caused the chuckle there?
Jamie: Well, you know I always knew I had amazing and wonderful friends, and it’s true what Jennifer said. They mean well. So, you would get the e-mails. Have you seen this thing, you really need to be having this quantity of pureed asparagus a day. You really need to be having 3 servings of these brussels sprouts. Amazingly enough they were all the vegetables that I don’t care for. So, they meant well and their intentions, I know they had my best interest at heart. They were afraid. They were as afraid as I was of losing the fight. But, it is, there is a wealth of knowledge out there. It really showed me how much my friends and my family love me. Within the first couple of weeks, I must have gotten the same e-mail from at least a dozen of them regarding certain foods I should be eating and certain foods I should not be consuming. I thought you know these are people that are taking time out of their schedule they must be sitting up at night doing the exact same thing I am. Pouring over the information that is out there on the internet to see what I could do to rally and fight it myself. It’s amusing in hindsight. They meant well. I think it’s funny. I still get the occasional e-mail on different pureed foods I should be consuming in mass quantities.
Jennifer: Can I add something, Annie?
Jennifer: I just want to say too that through the whole process I felt so much love and support coming from so many people in my community. I can’t thank them enough and express enough gratitude for that. I even felt that maybe this is one reason that cancer exists. It’s so that we can receive this kind of love and give this kind of love to one another.
Anne: You know, Jennifer, it’s amazing that you say that at this very moment, because we have just had a question come in from the chat room. Callers who are waiting and holding please bear with us. We have a lot of callers, and I promise you that we are going to do our best to get to each and every one of you. Let me take this opportunity to remind people that you can call in at 866Monday6. That’s Monday for Monday Night Radio. 866Monday6, you can Twitter us @mondayradio. You can e-mail comments to firstname.lastname@example.org. We have a lot of people in the chat room. The question from the chat room that speaks right to what Jennifer and also you, Jamie, were just saying. She says, “I have heard cancer survivors say they are glad they had cancer because of the deeper healing and growth it brought them. It’s hard for someone that has not had cancer to understand. Do you guys feel this way?”
Jamie: I feel absolutely blessed. I am so thankful and so grateful to so many different things that cancer has brought into my life. I didn’t mind being bald for 20 months. It’s just hair. It grows back, but the friends, the new friends that are now life long friends, friends that maybe you lost touch with over the years but maybe caught up on your story seeing an interview that I did. Or, maybe somebody posted something on Facebook and they heard it through the grapevine. I really do, I think that we are only dealt the hands that we can handle. It’s just brought so many wonderful people and new things and new appreciations to my life that I don’t regret it. I wouldn’t go back and change it if I could.
Anne: Jennifer, do you feel the same way?
Jennifer: Um, no not exactly. I can’t really say that I am glad that I had cancer, but I can say that I am really, really pleased with where I am at right now in my life as a result of the catalyst for change that cancer brought into my life if that makes sense. I wish that maybe the catalyst could have been a different one, but it wasn’t. It was this. So, for that reason I am happy with the changes that are taking place. Again, what I said before just feeling all of the love and support that continues to pour towards me and my family, that’s really beautiful.
Anne: Well, speaking of those changes, you have both had mastectomies. I don’t think that there is a woman out there who can possibly fathom; I know I can’t wrap my head around what that would be like. Not just physically, but especially in our culture. In addition to nursing babies with our breasts, which if we have done that and then you face losing that, I can imagine on one level in itself really does a number on your brain. But, also in our society so much is wrapped up on how we look, between the neck and the waist. Starting as little girls that has been pounded into us, that that is where our femininity is. So, can you each talk a little bit? We’ll start with Jennifer if you don’t mind this time. Really tell us what that is like. What kind of changes did that put you through? What is like to deal with losing such a visible part of what makes you a woman?
Jennifer: It’s pretty weird, Annie. I only had a few weeks really to contemplate the whole thing before the mastectomy. I was fortunate to have a photographer friend. She took some photos of me topless and that was nice. It was a time that we could sort of celebrate my body the way that it was at that time, and that I can look back and remember. Wow. Coming out of the mastectomy was funny too in a way, because the first thing they do is the mastectomy. The general surgeon removes all of the breast tissue and the nipple. Then, the plastic surgeon comes in and starts the reconstruction process right then and there and inserts a spacer and fills it with about 150 cc of saline solution. So, I came out of surgery already with a new breast growing so to speak. It was funny to me. I said, “Oh, my god. I couldn’t not have a breast in this society, not even for a day, a week, a month.” Get it in there, right away! I understand the reason for doing that surgically and everything so that I wouldn’t have to go through another major surgery again. But, it just seemed kind of funny to me. Hurry; get the new breast in there! You know? It has been an interesting journey. It still is. My reconstruction isn’t done yet. I did have the exchange, which means they take out the spacer, which is really quite uncomfortable. It’s hard; I’ve got it in my hand right now. It probably weighs, I don’t know. It feels like it weighs a pound. It would make a great paper weight. It’s in there, and what it does, it goes in between the pectoral muscles and spread those muscles out. They continue to fill that spacer with saline solution over 4 to 6 weeks. It really gets quite painful. Toward the end, it was more painful than the mastectomy itself that I can recall. I couldn’t even lift my body out of bed. I felt like I had broken ribs. I was on vicodin and everything. So, once they get that space between the pecs opened up enough, then they can do the exchange where they put in the nice squishier gel implants. I had that done, and things aren’t quite right. So, I have to have that done again. So, I’m still getting to know my new girls and bonding with them and falling in love again and all of that good stuff. It is quite interesting.
Anne: How about you, Jamie? What can you add to that?
Jamie: Well, mine was a triple negative, infiltrating ductile carcinoma. So, when they went and did the mastectomy, they didn’t immediately put a tissue expander in. So, I was on chemo for 20 months straight and had to deal with wearing a prosthetic. When I woke up from the surgery, I was really…My friends and my family were really shocked too. I was really expecting to have more of an emotional meltdown if you will, waking up with and one of the girls is gone. Somebody fix it! I really just didn’t have that. I think that because early on I knew that ok this is what is going to happen. My surgeon was up front. We’ll take one. If we need to take both, we’ll take both. But, in the end, you’ll get a new set of implants. Won’t that be great pre-breastfeeding for you? I thought, wow, I could have found a less evasive way to go about getting breast augmentation, but I’ll take it. So, the prosthetic, you know living in Arizona, with the heat, was very cumbersome. It created some neck and shoulder problems, because you have one that is a natural weight, and one, the prosthetic that I had was a fiber fill instead of the silicone so that it wasn’t as heavy and hot for the summer time. But, I really didn’t have any emotional, I don’t know, I didn’t really have any kind of major emotional meltdown with losing one. Even though I didn’t have one for quite awhile, it wasn’t until 6 months ago that they went in and did a left mastectomy, took that tissue out and put in the tissue expanders. So, I went for quite a while with just having the one. I did ok. I think if I hadn’t been hit with such a dire prognosis up front, I may have been more worried about that. But, my main concern was living to see the new girls get put in.
Anne: Alright, let’s go to a caller. Again, you can call and you are listening to Monday Night Radio with Jennifer and Jamie, two breast cancer survivors who are sharing everything with you. You can call them at 866Monday6, or Twitter us at @mondayradio. Send us comments by e-mail to email@example.com. Let’s go to Candy in Idaho. She is a survivor who is calling in to talk about a positive journey. Candy, are you there?
Caller #2: Yes, I am. Hello, Anne, Jennifer, and Jamie.
Anne: Hi, Candy, thank you for joining us. What is your comment?
Caller #2: Well, I think one of the things that has been most outstanding for me as I’ve talked to so many people, and I’m coming up on 5 years of surviving stage 3 with 65 weeks of chemo therapy and 42 treatments of radiation. I think everyone’s walk is so entirely different. When I am listening about reconstruction, I was two years out before I had reconstruction. I chose not to have anything invasive, not to have anything implanted into my body, because I already had something taken out that was negative, and that was the cancer. So, they used my own body tissue to create a breast. So, that’s why I say that everyone’s walk is different. The joy for me was after I had the reconstruction and stood up at a football game. I heard the Star Spangled Banner and put my hand on my heart and felt that I was whole again. Tears came out of my eyes. So, that was a really powerful moment with the reconstruction. But, I do want to talk about the journey of the support, and how different people made a different impact. One of the things that we did, and I have grandchildren, we made a paper chain for each of the different treatments that I had. I considered mine a wellness program and not a cancer journey, so every time we got rid of a paper chain, we had huge celebrations. We had just climbed a different mountain. That was one of the things that I thought was really, really helpful, was the miniature celebrations. The one time we threw confetti in the doctor’s office, and he stopped and he said, “Don’t anyone clean this up. I want people to see that celebrations are important in their journey.”
Anne: That’s pretty awesome. Candy, thank you very much for that comment, and thank you for being a survivor. One of the questions that we have for you ladies from the chat room, and first I should say that the people in the chat room are talking about how impressed they are with what they are hearing from you. You guys are amazing and articulate. But, one of them has a question. We hear that chemo can produce an abundance of severe side effects including becoming nauseous from any scents. I’m not sure how this relates to the other part of her question. Are there any skin care products that are safe and effective for those undergoing the same devastating cancer treatments? I assume she means in terms of the scent that won’t make you nauseous. As it happens, I think one of the people calling in will be talking about a skin care line she created just for that reason. But, if each of you could talk a bit about that particular side effect of chemo and how you dealt with it. Jamie, did you find that you had that reaction or any other bad reaction to chemo?
Jamie: Absolutely. In terms of the nausea, coffee was absolutely a staple of mine. Shortly after starting chemo, even the smell of coffee was just nauseating. On top of the everyday nausea, certain smells would trigger things. In terms of the skin care products I didn’t really have any scents that way. Anything that was really strong or with a tendency to be overpowering could certainly create a little bit of nausea. But, I did notice that my skin went through changes once I was on the chemo. Any product or lotion that had alcohol in it and my skin would just turn flaming red. It would be sore and itchy and I was actually amazed at the number of lotions that are out there for eczema and for skin care problems that actually contain alcohol. So, I spent an afternoon at the pharmacy. I sat there and went through, I think it was 82 bottles of lotion before I found one that was alcohol free. I just stuck with that one through the entire treatment. I am still using it. There’s a line of pure and natural soaps that I’ve found, body washes and shampoos that are also alcohol free. That pretty much took care of any skin problem. I understand where she is coming from with the nausea. It can be debilitating, because you can be out in public, shopping or at a store and a particular scent hits you and it’s all you can do to get out of the store or get to the restroom before you think you are going to be sick.
Anne: Understood. That’s just one of the many things that I think people just don’t really realize. Again, that’s why we are doing this show, because there is so much about the actual process that if you haven’t been there, you just can’t know. Callers who are holding, if you have a question and you haven’t yet talked to producer Evan, remember to press one on your dial pad and that will signal us that you are not only just listening through your phone, but that you would like to make a question or a comment. Let’s now go to Norma in New Jersey. She has actually authored a book for survivors. Norma, hello, welcome to Monday Night Radio with Anne, Jennifer, and Jamie.
Caller #3: Hi, thank you for having me on. First, I want to say to Jennifer and Jamie how impressed I am just with the courage and also the sense of humor that they have taken with their breast cancer journeys. Especially also having it so young in life, I was 40 years old when I was diagnosed with breast cancer. I was the ninth woman in my mother’s family to have it. My mother died of metastatic breast cancer. I have 3 great aunts that died of it. I have 1 aunt, my mother’s sister, who is also a survivor like me. Actually, when I went through it, two second cousins of mine on that side of the family, we all had breast cancer at the same time. I had 3 young kids. They were under the age of 12. Even though I had DCIS and LCIS, I decided to do bilateral mastectomies with immediate breast reconstruction. A couple of comments that I did want to make just from listening to them share their stories, in terms of reconstruction; I have interviewed my doctor who did the reconstruction on me. He is a feature story in my book, Pink Ribbon Journey: Stories from the Heart. The one thing he really impresses upon women to think about and to remember is that breast reconstruction has nothing to do with your prognosis. It’s all about quality of life. It’s about making you look and feel like a normal woman after you’ve undergone such a traumatic surgery to your body in losing two of the most important parts of your body for a woman. So, that was one point that I wanted to make. Also, to just say that we all can go through the journey of breast cancer, but we each take away with it a different kind of unique and special experience. That is one of the things that I focus on in my book. I interviewed 13 people for the book. It weaves together both the patient and clinical perspective of the breast cancer journey. So, it’s a very uplifting book. It really also is a great resource for newly diagnosed women with breast cancer. The doctors really speak about where treatment is headed in the future, where it was in the past, and why there are so many women surviving breast cancer today, because of the treatment and the diagnostic technology and stuff like that. So, if anybody is interested in the book, they can visit my website at pinkribbonjourney.com. Also, they can find us on Facebook. I thank you very much for taking my call.
Anne: Norma, thank you very much. Thank you for taking your journey and doing something so constructive with it as to write a book for others that are on their journey. Thank you so very much. Jennifer, I am going to put you on the spot, only because you are the first person who told me about this. We can ask Jamie about it as well. I had never before heard the term nipple origami until you told me about it. I looked it up. It is a real thing. It does not involve paper, which probably good, because you wouldn’t want paper cuts there. So, can you tell us what that is? Have you had it?
Jennifer: I haven’t had it yet. It’s on my bucket list. From what I understand, I don’t know exactly how it happens, but a little bit of the skin, right where you want your nipple is cut and pulled up and kind of folded on itself and stitched to make a little nipple protrusion. I asked my surgeon the other day, how they look. He said, “Oh, they look great!” So, hopefully it will.
Anne: Jamie, do you have anything to add to that?
Jamie: No, that’s next on my list. From what I have seen, there’s a lot of websites where you can just Google nipple reconstruction and they’ll show pictures of women who have opted to maintain one natural breast and only have the other side reconstructed. You can’t tell which nipple and areola is the real one and which one was stitched together and tattooed on. You really cannot tell the difference, and these photos are fairly close, so it’s like getting a custom job there.
Anne: That’s pretty interesting. When you mentioned tattoo, you are talking about the areola tattoo which goes with the nipple origami to give you the complete picture as it were. That’s pretty impressive.
Jennifer: There is a period of 6 months to a year, where one has to wait for that, because the scar tissue around the nipple isn’t ready yet to take the tattoo. I also just want to add, Annie, that I never planned on having a tattoo. I don’t have any tattoos, but when the doctor was talking to me about a tattoo, I thought color and pattern and design. So, now I am collecting all kinds of beautiful Mandela type images. Now, I kind of want to have the nipple areola of the month tattoo kind of thing going. I don’t know what I will do there.
Anne: So, maybe have a flower.
Jennifer: While we are on the subject of nipples, I do, I am a knitter and a crocheter. Those are my sons laughing in the background by the way, “While we are on the subject of nipples!” Let’s embarrass my teenage sons. Anyway, I told my doctor, I’m going to crochet myself a nipple. He kind of looked at me and said, “I think you are going to be the first one that has ever done that.” I said, “Well I’m going to.” Sure enough, I did and I came in with that shortly after my mastectomy. It looks great. I encourage women to make nipples.
Anne: I think that is absolutely great. Let’s go to another caller. We’ve got Joanne from Dallas. She is a survivor with something to add to the show. Joanne, for some reason my phone is not un-muting you. Let me try that again. Joanne, are you there?
Caller #4: I’m here.
Anne: Hi, Joanne. Welcome to the show.
Caller #4: Hi, how are you? Thank you for having me. First of all I really would like to say to especially Jamie and Jennifer and Candy that how much admiration I have for them. Especially Jamie for not taking the doctor’s recommendation to take something just to keep me comfortable. I really am a believer like Rhonda said. You run your show. You get aggressive, you run your show. You really have to go after it. You can’t just sit back and just take a piece of advice that maybe doesn’t sound right to you. For me, my journey, it’s been 8 years. I was fairly shocked even though I had had 3 non-cancerous biopsies since college. But, this one was so tiny I could barely even feel it. I didn’t expect it to come back with anything. It came back non-cancerous, but the tissue next to it came back cancerous. They said, “Your only option is a mastectomy.” I said, “Well, heck, I’ve been doing this dance since college on the lumps and biopsies. I’m going to have a bilateral mastectomy and reconstruction.” What’s funny to me is that some of your smartest friends, at least mine, didn’t really understand the reconstruction. I was sitting across from one and said, “Ok, it is skin saving.” She all the sudden the light bulb went off and she said, “Oh, so they only take out the stuffing. Now I understand.” It’s an interesting journey. There are a lot of ups and downs. The expanders, which I believe it was Jennifer called them spacers, I called them expanders. I thought they were just the devil in the deep blue sea. They were uncomfortable with the drainage tubes and everything, but getting through the construction process. I look better than I did before, which is great. I had a great family to support me through that journey and made a lot of great friends. It is a journey. One thing I would like to just toss out is that there are a lot of women I know in our community in Dallas who can’t afford, don’t have the insurance or for whatever reason cannot get the surgery, cannot get the reconstruction, do not have the support group, don’t know where to go. In our community, we’ve supported Gilda’s Club. We’ve supported the Breast Bridge Network. All of my doctors of that, a percentage of their surgeries are donated to these women who can’t afford the reconstruction, can’t afford the surgery. I just urge anyone who can help to look in their communities for those organizations where you can reach out and help someone who is not as fortunate as you are with the treatments that you are able to get.
Anne: Joanne, thank you very much for the comment. Go ahead.
Jamie: Can I add to that really quick, Annie?
Anne: Absolutely. Let’s say goodbye to Joanne.
Caller #4: Thank you so much for having me.
Anne: Thank you, Joanne. Thank you very much. Go ahead, Jamie.
Jamie: I would just like to add that I through this process have met a young woman aged 30 diagnosed with I think stage 3 or maybe more. Really having to fight for her life, and luckily she received grant money from Susan G. Komen to get the really good, quality care that she needs. So, I really appreciate that that grant money is there. At the same time, I would also like people to consider instead of buying a bunch of products with the pink ribbon, that maybe give 5% or less of their profits to Susan G. Komen or some other foundation. Just donate directly to some of these organizations and foundations that do provide the services and treatment that women need that don’t have insurance or live in an area that doesn’t have really good care so that they can move to an area that does during their treatment and recovery.
Anne: That’s a really good point. I’m really glad you brought it up. That’s been sort of one of the things that was the impetus for this show. There are just every product out there has a pink ribbon it seems. It’s just even the pink ribbons have pink ribbons. It’s almost redundant; because it’s almost that that has become the face of breast cancer is pink ribbons. That is so what we wanted to get away from with this show, to really put real faces to it. This is really what happens, and to not let people sort of be complacent and say, “Oh, well I bought a nail file with a pink ribbon, so there you go. Now, everyone is going to be great and they are going to cure breast cancer.” What a great suggestion to just donate directly rather than…You should certainly buy products that have pink ribbons if you want to, but again donating directly, you could spend the same amount. The ten dollars that you will spend on a product that has a pink ribbon will give maybe 50 cents to Susan G. Komen where as you could just donate that $10 and they would get the whole $10. Let’s go to another caller. We have Karen from Alabama. She has done something in Alabama to support survivors as well as I understand it. Hi, Karen, you are on the air with Jennifer, Jamie, and me.
Caller #5: Hi, Annie. Thanks for taking my call. I appreciate that.
Anne: Thank you for calling in. We appreciate you.
Caller #5: Well, I’ve been listening to their story, and I very much admire what they have to say. I think though I want to make the point for your listeners that not only is it important for them to have their medical treatments tended of course. But, so often what is overlooked is the spiritual component. That’s just what I wanted to encourage women who are going through this journey that the spiritual component can be equally as healing as the medical component. So, what I discovered through my own journey was that that indeed was true. As a matter of fact, what I learned was that you could use this devastating illness to be a faith producing opportunity. So, in the midst of that I also came to understand that I wanted more spiritual depth in my own journey. So, after I recovered from that and years later, it took me quite a while, but I did finally write a bible study. It is specific to the cancer journey, not necessarily to breast cancer, although that was my story. But, I wanted to be able to provide people with more hope, spiritual encouragement and comfort. So, what I did was to integrate my story with lots of biblical references and illustrations, parallels, not only that but to intermingle the readers own story. To be able to let them interact with the study itself. So, I’ve had that out for several months now. It’s called Confronting Cancer with Faith. Whereas most people can confront it with fear, this is an alternative, to confront it with faith. It’s a 6 week study. It can be used as a self study. It can be used as a small group, a coffee table, a coffee meeting with a friend, just however. It’s very versatile. You can look at lessons one by one, do it as it is prescribed as a 6 week format. However, each lesson stands alone, but it is very much an encouraging source of reference for people going through this journey.
Anne: Karen, I have two questions for you. Where can people find this? Secondly, is it non-denominational?
Caller #5: Yes, it is definitely non-denominational. It is geared to the Christian; however, it is also for non-believers, or believers for other faiths. It can be found through my website, it’s the easiest route confrontingcancerwithfaith.com. It can be ordered directly or through winepress publishing.
Anne: That was confrontingcancerthroughfaith.com?
Caller #5: It’s confrontingcancerwithfaith.com.
Caller #5: That’s ok.
Caller #5: All one long phrase.
Anne: Alright, thank you for the call. So, Jamie, I think we started with Jennifer last time, so I will put you on the hook. Just to ask you how your spiritual background, your spirituality however you define that, did it change? Did it help? Did you go through a crisis of spiritual questioning? How did this whole process impact that aspect of your being?
Jamie: It was actually quite significant in my story. Young, as a child, after losing my grandfather, I had pretty much put certain spiritual beliefs aside and I had adopted a different kind of non-believer approach to the Christian faith and it wasn’t…When I received my diagnosis, even then I struggled with it. I looked at my two daughters, and I thought how in this world can this be? My concern wasn’t really for myself. My concern was more if there is a god and why does he not see these two beautiful faces in front of me? Does he not have the same fear and worry for them that I have? So, again I was kind of pushed it onto the back burner that this is something that I have to go on my own. I was just amazed. Family members from back east, my grandmother, my own mother, the number of prayers and prayer chains that I was put on just grew exponentially. Every other day I would get another phone call, “You’ve been added to this prayer chain.” I thanked them all profusely. I certainly was not going to turn it down. I was willing to accept whatever help or support that I could muster. It wasn’t until after a surgery. I had a small reoccurrence in my liver after I started at Cancer Center. I was tired. My hope was up, I had seen the light at the end of the tunnel, but I had gotten to a point where I had been in the hospital several times with pneumonia, I had a liver resection done where they removed the bottom third of my liver. When it came time to wake up after surgery, I was just kind of stuck for lack of a better word. They hadn’t let my family in yet, but I was just so tired. I was tired of the pain. I woke up; I woke up in my mind anyhow. I could feel the pain, and I just thought staying asleep is just a much safer place for me to be. They kept trying to rouse me awake. I just wasn’t coming to. I just kept sleeping. They couldn’t get me awake, so they weren’t letting my family in. The chaplain at the Cancer Center came in. Suzy, she’s an absolutely wonderful woman, and I could hear her voice, she was talking to me. It was very comforting, but at the same time, I thought, “No, I’d just rather stay where I am, if it’s in limbo. If I just don’t wake up I won’t have to acknowledge the pain.” She kept coaxing, “Your daughters are here. They’re going to want to see you. You’re going to have to open your eyes.” There was just a moment where it just hit me. I opened my eyes, and she was there, and I saw here face. I knew then that she had been sent to me, not just because she is the chaplain at the Cancer Center, but she was kind of my guardian angel. I’ve often told her since then that I wouldn’t have come full circle and reaccepted my faith and that of my family and the majority of my friends if it hadn’t been for that moment. If she hadn’t been there when I needed her the most, so I think that god sends us little messages and messengers when he knows that we need them the most.
Anne: If we are open to them, we will see them. Jennifer, how about you in terms of spirituality? How has this, or has it affected you and impacted questioning or reaffirming or what impact has this journey had on your own spirituality and beliefs?
Jennifer: Well, first of all I have to go back to when I first discovered the lump, Annie. I just instantly recognized that it was a message from my soul or my higher self that I need to make some big changes in my life right away. I knew that there were some changes that I was kind of sitting on the fence about. Instantly I knew what side of the fence I needed to land on. Through that process of going through the experience of cancer and the healing that I am still undergoing now even though my body could be called recovered or recovering from cancer. I’m still really doing the deep soul work and the emotional healing of the things that led up to cancer being in my body. Along that, it has been a pretty amazing route, because people have come into my life that I couldn’t do this without. It’s been an amazing journey. So, I am thankful for that message of cancer.
Anne: Ok. Let’s go now to someone who has been waiting very patiently. We have Lenore, who is in I think in Denver, who has a book she has written. Hi, Lenore, are you there?
Caller #6: Yes, I am here, thank you for taking my call.
Anne: Oh, thank you for calling in. What would you like to tell us?
Caller #6: It’s actually 3 books that I want to talk about. They are all related to breast cancer. The first one is the book that I wrote myself. I’m a 12 year survivor, by the way. I had cancer in 1998, and a mastectomy with no reconstruction. My book is called Another Chance at Life: A Breast Cancer Survivor’s Journey. By the way, the listeners can find full information about all three of these books by just going to the home page of my website. That is very simple, it’s dvorkin.com. That’s my last name. My book is the story of my own cancer, and why I chose not to have reconstruction is one of the parts. Then, it also has appendices on it for risk factors for breast cancer and ways to help prevent breast cancer and a lot more information. But, it’s mainly a very personal story about my breast cancer experience. Then, the second book I contributed an essay to this, it’s a brand new book. It’s a free e-book. It’s called How We Became Breast Cancer Thrivers. It’s edited by Beverly Vote who is the publisher of Breast Cancer Wellness Magazine. It’s 44 essays by breast cancer survivors. My essay is in there. It’s a 4000 word essay that is in there. Did you have a question?
Anne: No, I’m just marveling at what you’ve put together.
Caller #6: Oh, well this thing with Beverly Vote just happened. I was invited to contribute an essay to it a couple of months ago, and then she put it together fairly rapidly. I haven’t read the whole book yet, but I just wanted to tell people about it. Especially because it is a free e-book, that makes it more attractive to people I think. My book is not expensive at all, the paperback is only $9.95 from Amazon, and it’s also an e-book format from smashwords.com. That’s only $2.99. So, that is quite inexpensive also. The third book, besides being a writer, I’m an editor. I’m an editor and proofreader. This last book I edited most of, and it hasn’t been published yet, but the title of this is The Lovin Ain’t Over for Women with Cancer. It’s by a man named Ralph Alterowitz. He lives in Maryland and his wife is Barbara. They wrote it together, Ralph and Barbara Alterowitz. They run a place called the Center for Intimacy after Cancer Therapy, that’s CIACT. The title comes from because Ralph himself had prostate cancer several years ago. He wrote a book about sex after prostate cancer called The Lovin Ain’t Over. So, they just kind of continued that title for this one. This one is The Lovin Ain’t Over for Women with Cancer. It’s about renewing sexual intimacy after breast cancer or gynecological cancer such as uterine cancer. The book can be preordered. It will come out in a month or two I hope. So, just wanted to tell people about that also, I did want to make the comment that this has been an extremely interesting show. I have listened to every minute of you with great interest. I did want to say that actually 4 out of 5 women, I just looked it up with the new statistics from this year, 4 out of 5 women do not have breast reconstruction after breast cancer. I chose not to have it myself. I just had a left side mastectomy, and I’ve been perfectly fine wearing a very nice silicone prosthesis, and some very nice mastectomy bras. It’s quite comfortable. I’m not even aware that I have the thing on most of the time. It’s been a good choice for me. I just wanted to add that statistic there. Also, I was looking at some stuff online here, and it said that not all women are good candidates for reconstruction, a few factors that make them not be good candidates are if they are obese, or they smoke, or they have heart disease or diabetes. Those things can lead to serious problems after surgery. So, just wanted to add that comment there.
Anne: Well, Lenore, thank you so very, very much. Again, her website is dvorkin.com. Just a quick break for a station identifier or a show identifier, you all are listening to Monday Night Radio and our guests are Jennifer and Jamie who are both breast cancer survivors who are here telling it like it is. You can call in at 866Monday6. That’s 866Monday6. You can Twitter us @mondayradio. Or, send us e-mail questions or comments at firstname.lastname@example.org. I have to take this moment also to say that we are running over. We fully anticipated that, but I’m not sure that we actually asked Jennifer and Jamie if that would work for them. So, if either of you or even both of you have to leave, by all means let me know and we will not hold it against you. We are so grateful to you being here. If you can stay for a while longer, we would love that too.
Jamie: You know what, Anne, these days all I have is time.
Anne: Alright, well we appreciate that. Thank you. Alright, let’s go to another call.
Jennifer: I’ll be here for a while.
Anne: Alright. I’m sorry I thought, yeah. Let me just take this moment to collect and thank the two of you personally, because this is just beyond anything that we even dreamed it would be. You both are just so wonderful to come and talk like this. We so appreciate it. I don’t know if you guys can see the chat room or not, or know to look in the chat room. It’s on the page right below your show description, but the women in there also are just talking about how incredible this show it. It’s because of you guys and the people that are calling in. I am very, very grateful to know both of you, Jamie just virtually, and Jennifer personally as well. So, thank you very much. On that note, let’s go to another caller. Let’s talk to Rhonda from Miami Beach. It looks like she has got a website for survivors. Rhonda, hi there.
Caller #7: Hi, Annie, how are you? Hi, Jennifer and Jamie.
Anne: I’m well, but as you can tell, I am starting to stumble on my words, because I am just so flabbergasted by this awesome show and these wonderful women. What is your comment?
Caller #7: First of all I wanted to say thank you to Jamie and Jennifer for sharing their stories. I know I didn’t have to go through quite as extensive a surgery as either one of them, but I can imagine what it would have been like if I had. So, I applaud their courageousness and bravery in going through that process and also sharing that information with us. My website is really targeted to breast cancer survivors who are done with treatment mainly because for me I had a lot more difficulty and more issues and challenges getting over treatment than I did actually going through treatment. I didn’t really understand the impact of going through mostly chemotherapy and radiation therapy and the impact that would have on me and how it would be more challenging for me to recover from that. So, I was inspired by my own personal experience to create breastcancerpartner.com. It’s really focused on helping breast cancer survivors recover through more of an integrated health and wellness approach and looking at the whole person rather than just looking at your medical care and your follow up care after treatment. It looks at the physical aspect, the emotional, spiritual, as well as mental aspects of recovery. So, again taking a more holistic approach.
Anne: That sounds excellent. Go ahead, Jamie.
Jamie: I was going to say in all of this pink ribbon stuff we always see and hear race for the cure and let’s focus on the cure and the treatment and I’d like to see the focus more on healing and the holistic approach is really the only way to do that I think.
Caller #7: Yeah, I think so.
Jamie: Thank you.
Caller #7: Oh, sure. For me when looking for resources that focus more on survivorship and life after treatment, there isn’t as much information or the abundance of information out there as there is for once you are diagnosed and once you are going through treatment. There is this whole infrastructure to support you through that process. But, when you are done, you are done and your doctor says, “Come back and see me in 6 months,” or 3 months or whatever your follow up treatment cycle or appointment cycle is. So you are sort of left up to your own devices to really sort it out and get your life back together. For me, I just assumed that I could pick up my life where I left it off before my diagnosis, but it wasn’t the same. I certainly wasn’t the same. So, my normal was not what I expected it to be. In some ways I am still trying to figure that out even though it has been 2 and a half years. I would imagine that you guys probably have been through the same experience or a similar experience.
Anne: Rhonda, what is the URL for that website?
Caller #7: breastcancerpartner.com.
Anne: Excellent, excellent. Thank you very much for your call. We really appreciate it.
Caller #7: You’re welcome. Thank you once again for taking my call.
Jennifer: I just wanted to add something right there. I didn’t get the caller’s name, but what I really get from that is she is saying that her experience with breast cancer like mine didn’t end at the end of the treatment phase, but it just kind of opened her up to the whole emotional content of her life that needed healing too. That is a huge part of the treatment that is probably not being addressed or is not being addressed by her current medical system. In order to not only help the woman heal and to prevent reoccurrences of breast cancer, but even further holistic models for our children and our daughters how to live in a healthy way that would hopefully prevent them from taking on some of the emotional content that we can hold inside our bodies that can manifest in disease.
Anne: And talking about kids in general, you’re both parents. So, I’d really like to touch on how that played out for your kids. How much did you tell them? How much did they know? How did it affect them? I know that kids at different ages are at different stages, but I just can only imagine what this does to kids who are suddenly faced with the uncertainty maybe of is mom going to be here next year. Jennifer, let’s start with you.
Jennifer: It was pretty tough. From the beginning, intuitively I knew that I had cancer although nobody else knew that at the time, and they wouldn’t speak it. 80% of this is benign, etc. So, I told my kids it’s probably going to be ok, but I kind of left a little door open for them to know that it might not be. I mean it is going to be ok, but it might be cancer. Actually I didn’t tell them, because the day I found out I had a horrible, horrible headache. I couldn’t get off the bathroom floor. Their father explained things to them. I’m not sure exactly what was spoken, but I do know that they were all pro mastectomy because they really wanted to see the cancer removed from my body. Having a little daughter who has not developed her breasts yet, this has been probably fairly traumatic for her. She has been kind of freaked out about it. She is kind of eye level with my breasts, so she has seen the changes right there in front of her. So, it is something for us to continue to work on and for her to work on too.
Anne: Do you think that she is afraid that…
Jennifer: That she might get cancer? Yeah. She definitely is.
Anne: That growing breasts is sort of the precursor to getting cancer. That’s what women do. You grow breasts, and then you get cancer in them.
Jennifer: That could be. I hope it’s not that definite with her, but there is definitely some fear associated there. You know, I brought home a few little coloring books that they give moms. Talking to kids about cancer, and stuff like that. She really liked those. Those were great. I’d like to see more resources for the kids and support groups for the kids too.
Anne: Jamie, what about you? I’m not sure how many kids you have. I know you have teenage sons, because you told them that they were getting a chuckle out of the nipple discussion.
Jamie: Oh, no, that was Jennifer.
Anne: Oh, I’m sorry.
Jamie: I actually have two girls. They were 8.5 and 10 when I was diagnosed. I was just very honest and up front with them. At that age I don’t think…They understood what cancer was. Their equation with cancer was going bald or dying or a combination of both. We just talked through it. Are you going to be bald? Absolutely, I am going to be bald. Are you going to wear a wig? Absolutely not. Then came the time after the treatment had progressed and I had to undergo several transfusions and that meant lengthy hospital stays and the cancer in my lungs put me in the hospital with double pneumonia several times. I was really amazed at how strong they were. They had seen me in the hospital with tubes and undergoing chemo absolutely at my worst. They really just took it with a grain of salt. It was when I would be at home and with what I thought was the least aggressive side effect, which was the nausea and the vomiting that then they were able to identify. They could see mom in a hospital bed. They could see the tubes. They knew about the surgeries. They could see the treatments, but it wasn’t something that they personally could identify with. But, when I was sick to my stomach and on the bathroom floor in front of the toilet and vomiting, it would just reduce them to tears and they would just come unglued. It took me a little bit to figure out what was going on, but in their little world, that was the one thing that they had been through that they could identify with. They knew how awful that was. They didn’t know the chemo. They didn’t know the hospital beds. They didn’t know the IVs and all of that, but they could identify with me when I was sick to my stomach and vomiting. It just terrified them. We were able to talk through that. It took a couple of months, because every time it was almost like clockwork. As soon as I would get sick, I had two crying girls. So, I’m trying to deal with being sick and they didn’t want to leave my side, but the more they stayed the more they cried. It took a little bit of tweaking and just being honest with them for them to realize that mom wasn’t going to give up that easily. There were several times that my youngest daughter, when she would come to see me in the hospital and the tubes or the oxygen or any of those things might have scared her. She would get really concerned. She had the loaded question, “Mom, are you going to die?” It was all I could do not to lose it. I would say, “You know what, Bailey, not today.” That was sometimes the best I could do. That was the best I could offer, and the only guarantee that I had was that I knew that I had what it took to get through one more day. That seemed to be enough for them, being open and being honest with them.
Anne: You’re listening to Monday Night Radio with breast cancer survivors Jamie and Jennifer. You can call in and talk to them, ask a question, or give a comment at 866Monday6. You can send us a question by Twitter at @mondayradio or by e-mail at email@example.com. You can log in and join us in our chat room and ask a question that way. Earlier in the show we were talking a bit about skin sensitivities and scent sensitivities while going through chemo. Jamie, you mentioned that your skin was very sensitive to anything that had alcohol in it. We had a listener in the chat room that was asking also about skin care that is safe and effective for those going through cancer treatment. We have a caller on the line right now. Uh-oh, where did she go? I think we lost her. Hang on a minute. No we didn’t. There we go. It’s Jo from Chicago. She is going to tell you about something for these very things. Hello, Jo, are you there?
Caller #8: Yes, I am, Anne, how are you?
Anne: I am well thank you. Thank you so much for calling in. I know that you have something to tell us about. Thank you for calling in and listening to Jamie and Jennifer.
Caller #8: It has been my honor to hear these very brave ladies tell their stories. I really have the world of respect for them. They are the real heroes. I am not a breast cancer patient or survivor, but my daughter was. That was the worst experience of my life. It continues. It’s not that it’s funny, but I sometimes say when cancer enters your life you might as well set a place for it at the dinner table, because it never goes away. It is always there. There are so many, so many different aspects and elements that you have to deal with and address. We are here talking about all of them, and we could just go on and on and on forever. One of the things that was most important to me after seeing my daughter go through chemotherapy and earlier on we had a caller, someone called in with questions about skin care and whatnot. I saw what chemotherapy and radiation did to my daughter’s skin. I was devastated. I wanted to do something. You want so badly when you see your loved one, to do something that is relevant. Nothing happens overnight, but what I did do was create a skin care product line that features the acai berry from Brazil. It is 100% natural including the natural preservative. It is a patented preservative. There are millions of products out there that say natural, natural, natural and yes their ingredients are, but then when you add the required preservative that is the component that usually is not natural. That’s when it deteriorates from the natural ingredients. So, what we’ve done is I’ve found a formulator who has a strong background in oncology and only deals with raw materials. The beauty of our products, the featured ingredient is this phenomenal acai berry from Brazil. Which, by the way, the Chicago Tribune had just posted a very significant article in last Monday’s feature section, talking about countries all over the world and what their ratios of breast cancer were. In Brazil it was practically nothing. I’ve been in discussion with the reporters from the Tribune on this very issue, saying, “Hmm. I’m not scientist, but do you think it is a little bit relative here?” You know what I am saying?
Caller #8: So, we have this line of skin care that is available on contessacares.com. I’m in the process right now of establishing a foundation that takes care of people who are in need of wigs and prosthesis and hopefully therapy too. We’ve talked about so many things. The medical issues are one thing, but the psychological effects that cancer patients have and they stay with them, they just linger forever. If you are single there are certain issues. If you are married there are certain issues. When you have children involved there are still other issues we’ve discussed. I watch all of these things occur and they are horrendous to be able to address yourself. Most people don’t know how. They need help. That is what I want to do. I will dedicate the rest of my life to providing any possible help that I can. You have again the medical issues. You have all these other components like wigs and prosthesis. Jamie and Jennifer touched on both of those. They are very costly. Insurance pays for a portion of them. They certainly don’t pay very much. Here you’re dealing with women who have lost their breasts one or both. That is the thing, it shouldn’t be, but that is something that distinguishes us as women. We love our bodies and we want to feel womanly. Now that has been taken away. You’ve lost your hair. What can we do to make women feel a little bit stronger mentally, emotionally, as well as medically? So, that is my plight. I really want to do as much as I can. I am listening to these brave, brave women fight their battle. I still feel so inadequate. They just make me want to do more.
Jennifer: Thank you.
Anne: Well, Jo thank you so much for the call. Again, that is contessacares.com.
Jennifer: Can I pipe in?
Jennifer: Is your name Contessa or is that your daughter’s name.
Anne: Oh, you know what she is…
Jennifer: Oh, ok. I just want to acknowledge her support of her daughter as a mom and all of the moms out there that are watching their daughters go through this. I really want to thank my mom. It was an amazing journey for her also from the time I went in for my first biopsy, she was there. It was amazing, the time that she spent with me when I came out post op, because when they took out that initial chunk of flesh and I came out of anesthesia, I knew it was cancerous. There was a lot of anger, a lot of sadness and grief there. I just let it all out in the post op room. I wanted my mom, and she was there. She was amazing, just holding that face for me and spoon feeding me applesauce. She spent both nights with me at the hospital. She wouldn’t leave. It was just so sweet. It was such a healing time for us to be together. I just want to acknowledge all of the moms out there and in your journey with your daughter. Thanks.
Anne: Jamie, do you have anything you want to add to that?
Jamie: It’s one of those things being a mom of two girls, it kind of pushed me because I’ve often said that if I was by myself and I didn’t have children, would I have gone through quite the fight that I did, or would I have given up? Coming out of the mastectomy and the original diagnosis, it hit me hard. I’m not going to say that it didn’t. But, what bothered me the most was having to make that phone call to my mom. I replay that in my head all the time. It’s a call that I don’t want either of my daughters to ever have to make, which is why I share my story every chance that I get, every opportunity that I am asked to do so for these types of venues. Because it is just so important to me that we do something, that we empower ourselves as patients, as moms, as women, but at the same time not lose sight of the fact that it is not just women who are affected by breast cancer. Every 69 seconds in the United States somebody loses their life to breast cancer. It’s not just women. You have to…I’ve taken a new slogan from a song by Stand Up to Cancer Organization. The song is called Just Stand Up. There is a line in the song that says “Be your own miracle.” That’s what I am trying to teach to my girls. That is what my mom taught me from the time I was little. That gave me the strength to pull through and fight as much as I have. I hope that it is something that I have passed onto my daughters so that if their turn comes they have what it takes.
Anne: Say something.
Jennifer: Hello? Am I there? Can you hear me, Annie?
Anne: You’re there. Yeah. Did we lose you?
Jamie: I thought that the call had dropped.
Jennifer: I think for a second that the connection went out.
Anne: So sorry about that. But, no you are here and everyone can hear you and they can call in at 866Monday6. We have someone who has just been waiting so patiently. So, I definitely want to get to her. Her name is Brenda, and she is calling from San Antonio. I hope she is still there. Brenda, are you there?
Caller #9: I am.
Anne: Hi, Brenda. Thank you for waiting for us.
Caller #9: Yeah, hi. Well this is just an incredible show. I get real emotional just thinking about all these women. I have walked down similar roads as each one of your guests. I’ve had 10 breast cancer surgeries and 8 rounds of chemo. You know when I went through breast cancer 6 years ago I felt like there was really something missing from the treatment component. Most of the focus was on the cure. But, as one of your other callers stated, once you get breast cancer you are sort of pushed off the edge of the cliff and left to sink or swim on your own. You’re out there paddling frantically and looking for answers. So, from my point of view it became about survivorship. Not just for me, but for my family. So, where my journey has taken me, it has been on one of a healing physically, mentally, and spiritually. I am a woman of great faith. It’s also taken me. I’ve abandoned a career and started a media company to produce videos for cancer families, for every member of a cancer family. Our first effort, our first endeavor is breastcancersisterhood.com. It’s aimed at every member of the breast cancer family. When I was 12, my father died of cancer. My mother totally fell apart. She and I role reversed. I became her caregiver. That’s a role I still play in her life. When I was 37 my late husband died of cancer, so I was his caregiver. Now, I’m a survivor. So, I kind of feel like I know what cancer families need and what is missing from this healing mix. So, I’ve taken a background as a journalist and a filmmaker and brought all of this together and produced over 100 videos for every member of the family. It is everything from psychosocial oncologists discussing with parents just like Jennifer and Jamie have been saying what do you tell your kids. What is age appropriate for a 6 year old may not be for a 12 year old or older. How do you deliver this kind of information to them and give it to them in sections that makes it understandable for them. We talk about everything from lymph edema to diet and nutrition. We’ve partnered with whole foods on doing a series of nutrition videos at whole foods. I have one of the top breast cancer blogs on the internet, Brenda’s blog. Most of what I talk about is from that point of diagnosis through treatment and finding your new normal and beyond should recurrence develop. There are so many things that if you start with point of diagnosis and treatment that on any given day even the best of doctors fail to tell you about. I had a girlfriend that was diagnosed the same day I was. Her prognosis was just excellent, but she died actually as a result of cutting her cuticles during chemo. No one had told either one of us that you are really vulnerable. Your immune system is really down. Infections can take their toll. You shouldn’t do things like cut your cuticles and floss your teeth. Unfortunately that is what happened to her. I kept saying we were in different parts of country, but we talked every day. I would say, “Have you called your doctor?” She was kind of intimidated I think, and she was not a good advocate for herself. I would always say, “You need to call your doctor.” She would say, “Oh, but he’s so busy. I don’t want to bother him.” By the time that she did go to the emergency room, she had a staph infection that was systemic, and there was nothing they could do about it. Essentially she died from cutting her cuticles. That just absolutely devastated me. I thought there has got to be a better way. That was another impetus for breastcancersisterhood.com. Everything has sort of come together to want to reach out and give women whether they have just been diagnosed or they’ve been survivors for 20 years, information that they need to know. We have a 19 year old, Amy, who is blogging for us. Amy was 13 when her mom was diagnosed. Her father left them the day after. Amy became her mom’s caregiver. I really have identified with Amy from the day I met her. So, she is a college sophomore now. Actually, she is in Europe this semester. She is living in a castle with a moat. She is continuing to blog. She is talking directly to other kids and teens whose parents have cancer, not just breast cancer, but any kind of cancer.
Anne: That website again is breastcancersisterhood.com right?
Caller #9: I’ve also written a…
Anne: Thank you.
Caller #9: Ok, thank you.
Anne: Thank you very much. Jamie, did you feel like you got everything that you needed from your doctors in terms of information? Or did you feel like you really needed to do a lot of work yourself and be your own champion?
Jamie: You know with my first oncologist I did. It was, ok you have breast cancer and this is the chemo that I am going to put you on because you have an aggressive cancer and we’ll start next Monday. As he’s half in the door and half out, do you have any questions? Kind of daring me to ask one or not. I didn’t really feel like I had the information that I needed. I would stay up until the wee hours of the morning researching, doing my own medical research. What can I do to help myself with the treatment? I was really lost. I had to ask and do some digging. What kind of cancer do I have, because nobody has told me? I know it is breast cancer, but is that all there is to it? It’s just breast cancer, or can you tell me some more? I wanted to kind of touch on it. I am glad that you asked, because when I started at the Cancer Treatment Centers of America they take the whole holistic approach and the whole body approach to healing. So, every time I went for my visits I saw my oncologist. He would go through my labs and my scans and how my values were. Then, I would see my nutritionist; she would go through foods that could help with my fight. Foods that would help with my lab values, my red count, my white counts are low. Foods that would help battle the nausea and foods to stay away from. Then, I would see my naturopathic doctor. She would come in and have me on different supplements and natural products that would also help ease the side effects of the nausea and the chemo and the radiation ablations. Then, I saw the mind and body therapist. So, there were all these different components that came together under one roof. I was just kind of in the center. I was the focal point. For once, I felt that I had a team and they were actually working towards the same goal. I wasn’t just an HMO claim. I wasn’t just a co pay. I wasn’t just another number sitting in a waiting room. Their investment in me was as much as I was investing in myself. They haven’t left my side since day one. I can identify with the what do you do after your treatment. I had to go in every month for my scans and every month for my lab values because my cancer was so aggressive. The first time my doctor said, “You know what we can move you to the 3 month plan.” It was a little war rising inside my head. Half of me was shouting hooray and the other half was absolutely terrified. All of the what ifs. What if the cancer comes back? What if we wait 3 months and the first month came and went? Any sniffle I had, any cough, “Oh no, what if it is back?” All I had to do was talk with my care manager. The chaplain would call me to see how I was doing. My care manager would call. There’s constantly people calling and checking on me. I get busy with my schedule now, and get caught up in work, and I get a phone call in the middle of an afternoon. “This is your care manager, this is Sheri calling. This is Julie calling from the Cancer Center. We haven’t heard from you in a couple of weeks. We are just making sure that you are still eating your veggies and doing what you are supposed to be doing.” They are constantly checking up on me, and I don’t have that feeling of abandonment or loss or what do I do with myself now? Because they are now kind of the extended family, whether I hit the 1 year mark for remission, 2, 3, or 5 years, they are always going to be there. I have their support and their care and the comfort and security in knowing that they are there and just a phone call away.
Anne: Jennifer, how about you? Do you feel like you’ve got that kind of a support network from your medical providers? Do you feel like they really let you know all the things that you needed to do and not do? Or, did you have to sort of go out and figure it out for yourself?
Jennifer: I think we all have to go figure it out for ourselves really. I mean because everyone’s path is different. All the cancers are different. There are different combinations of things. So, the different practitioners that I sought out, I found some that have been very helpful. My surgeons, they know what they know and they didn’t have breast cancer, but they’ve experienced people in their offices. They can only share what they know from their side. The best support that I have received has come from the breast cancer support group with other women going through the process. It’s part of the Rocky Mountain Cancer Center. They have a specific nurse that contacts all of the new breast cancer patients. She’s kind of the breast health navigator. I can go to her any time and she will give me resources or hook me up with people in the community or just listen, just hold my hand. I went there the day before my mastectomy. I still wasn’t even sure if I was going to even go through with it. I just cried, and she just held my hand. She came and visited me in the hospital. She has been my best resource in the medical community. I do want to say one thing though about when women are told they have breast cancer there definitely needs to be more sensitivity and awareness around that with the doctors that are delivering the message. I mean it was so obvious to me that I had cancer when the receptionist at my doctor’s office called and said, “Well, we need you to come in on Wednesday instead of on Friday.” I said, “Well is this because it’s bad news?” She said, “Well I don’t know anything about that. We just need you to come in.” I’m going doctors don’t have you come in sooner if it is good news. I said, “Tell me now. I really want to know now. Don’t make me wait overnight.” They wouldn’t do that. I hope there are some doctors listening tonight out there too.
Anne: Jamie, we have someone calling who is asking specifically for you. We have Jim calling from San Francisco. Jim, you are on the line with Jennifer and Jamie.
Caller #10: Hi, how are you guys?
Anne: We are well.
Caller #10: Jamie, you are an inspiration to me. I’ve gone through stomach cancer and pancreatic cancer and I’ve gotten to know you over the years. I just wanted to call and tell you how proud I am of you and how strong you are and how much that means to me in my life, because when I got the notice that I was cancer clear I didn’t get that total kick in the pants yahoo, I’m doing great. I didn’t get any of that. I just kind of went back to my humdrum life of trying to make things work out. I know you, and you know me. I’ve gotten to watch you over the last two years and I cannot think of another person that I have more respect for and more regard for. You are my light. I am very grateful to have you in my life. I wanted to just jump in this conversation and embarrass you and tell you I care about you. I hope to hear from you.
Jamie: Thank you.
Anne: Well, thank you for the call. Jamie, are you embarrassed?
Jamie: No, I don’t get embarrassed. I don’t…The 20 months bald, or I’m not quite sure what it is, but I just don’t get embarrassed. I do. I have an amazing network of friends and supporters who rallied beside me, in front of me sometimes pulling and leading the way, and other times behind me pushing me to get to the next stage. It wasn’t always easy, but I really couldn’t have done it without every single one of them.
Anne: We have one other person that has been holding on almost as long as Brenda had. Again, I am so grateful to all of the callers for hanging in there with us. So, let’s go to Olka in Florida. I’m not sure if I am saying that right. I’m also not un-muting her right. For some reason, I am not able to bring her on. Hang on. Bear with me. There we go. Are you there?
Caller #11: Yes, I am, and you did say it right.
Anne: I’m sorry about that technical difficulty. I think we have really taxed the system tonight and put it to the test. Thank you for hanging in there with us. You are on the air with Jennifer and Jamie.
Caller #11: Thank you for having me, and hello to everybody. My little bit of input tonight is that I have been diagnosed with cancer as well in November of 2008. The story is a little different because I had a background as a health practitioner which is complementary medicine from Germany. I am also a hypnotherapist. So, I have all this complementary knowledge in the back of my head while I got the diagnosis. One of the most important aspects that I have found that I really would like share is that about 2 minutes after I got the news I had a friend sitting next to me at that moment. He pointed out to me, “Olka, remember you are not the diagnosis. It will change you, but you are not the diagnosis.” The thing that is one of the most important things when we as a caregiver or I like to call them advocates, when we are having friends and family members when we are dealing with the diagnosis of cancer or any other life threatening disease for that, that we remind them that they are a person. It is so very easy when you start doing all of the treatments and your life all of the sudden stops the way that you know it, but you are running from one doctor’s appointment and one surgery to the next, and in between you recover. We get caught in that whole model and forgetting who we are. Then, we are reminding ourselves as well as the people around us that we are more than a person who has cancer. We are still who we are. This diagnosis and the journey we all take which is a very, very individual journey, I agree, that it most likely will change us. We have a say in what kind of change that is. As we hear from Jamie, as we hear from Jennifer and the other callers the diagnosis has done something with us. As far as what I have heard tonight and I would say the same for me. I wouldn’t necessarily volunteer to have it again, but it certainly has changed me and made me a better person I believe.
Jennifer: If I could say something too. I really appreciate you bringing that up. I came across something the other day written by Maya Angelou. It was something that I had lost touch with. It is really important to me. I keep it with me all the time in my purse. She said one time, “I can be changed by what happens to me, but I refuse to be reduced by it.”
Caller #11: Right.
Jennifer: I think that falls in line with the message that you are giving here. I really appreciate you bringing it up.
Caller #11: Another thing that I would like to mention. So many have offered and pointed out what can be done for us. When we look at the mind-body connection that we can use so powerfully. As a hypnotist I’ve done that in the past for myself as well as for my clients. There’s also something that I have found to be very, very helpful when it comes to pain, when it comes to preparation for surgery, when it comes to post surgery work that will help to reduce the amounts of medication we take. It will help to heal faster. All of my doctors that have worked with me have been very surprised throughout radiation treatments my skin didn’t do any big thing. It was actually the opposite. The doctor at some point came and said, “We don’t know exactly why your skin is not reacting.” It had a lot to do with the visualizations that I used for myself. There is an enormous amount of very powerful thoughts I want to say, at our fingertips when we know how to use them. That is one of the things that I would encourage people, not just people, women as well as men when dealing with whatever kind of diagnosis, to maybe even put on the radar that yes we can do some of the work through the nutrition and through others, but there is also the power of our mind, the power our visualizations. We can change situations within our own body by knowing what it is that we need to do. One of the things that I offer is teaching it so that those who are interested in it can use it themselves throughout their treatment and afterwards to empower themselves. It’s easy to do even over the phone.
Anne: Thank you so much for the call. That is some really powerful stuff. I am really glad you hung in there and waited and came on the air. Jennifer, we have about four minutes, not even quite four minutes left. So, I just want to give you each a minute to say anything you would like really along the lines of someone who is just starting this journey. What would your advice to them be?
Jennifer: Oh, boy. I don’t know. I was actually thinking of sharing a poem. Can I share a poem with you instead that I wrote at the beginning of my journey and just leave at that and say goodnight?
Jennifer: Also, I want to wish all of your callers the very best. Jamie, I want to thank you so very much for sharing. I wish you the absolute best on your journey. Thanks I didn’t quite hear that. The connection was weird. So, I wrote this poem very early on in my journey with cancer. It is called Cancer Doesn’t Lie. Cancer doesn’t lie about being broken promises, betrayal and all the hurt and sorrow of not seeing and being seen. Years upon years of frustration and tears bottled inside, trying to hide. No, cancer doesn’t lie about the damage all that does and that rampage that is, was when we compromise our hearts, dreams for an idea that is not ours and never was. No, cancer doesn’t lie to the body, mind, psyche, spirit. It lies in weight until some tumor hears it, and awakes to the trueness and truthfulness of who we are and what we are destined for, so much more than what has been. No, cancer doesn’t lie to anyone. It is too kind for that.
Anne: Wow. Thank you very much for sharing that. Jamie?
Jamie: That was amazing. I loved that. Thank you for sharing that. I wish you well in your journey as well. It’s like one of the callers said, it doesn’t end. I had to come to terms a long time ago with what my reality is. The reality is that I have cancer whether it’s in remission right now and whether it decides to rear its ugly head and come back. I’ll take it on another round, 2, 3, and 4 whatever it takes until it’s tired of fighting, because I won’t give up. I can’t afford to. But, I would like to say that for anybody that is starting, just found out they were diagnosed or starting on a cancer journey. If you just have questions about the kind of care that you are getting and you are not happy with it, empower yourself. Be vigilant about your own healthcare. Nobody is going to do it for you. Ask for second opinions. Seek it out. I would like if I can to leave a phone number, one of the most important phone calls I ever made. I wouldn’t be here.
Anne: Be quick, we have 7 seconds.
Jamie: 1800333CTCA, the most important call you will every make.
Anne: 1800333CTCA. Is that right?
Anne: Jamie, thank you so much and Jennifer if you are still there. I think you are still there. Thank you both so much for making this so far absolutely the most incredible show that we have ever done, and probably will remain so. Thank you both and I wish you both the very best on your journeys.
Jamie: Thanks for having me.
Jennifer: Thank you, Anne.
Anne: That was Monday Night Radio with Jennifer and Jamie and thank you ever so much for tuning in and listening to us. Give us a follow on blogtalkradio.com/mondaynightradio if you like the show. Thank you and talk to you next week.
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