[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
When someone has metastatic breast cancer, it’s scary for them and for you. What can you do to really help? What should you say? Is it better to just listen? Today’s guest received a DeNovo metastatic diagnosis in January of 2021, and then elected to retire early from a 30 year technology sales career in order to slow life down, focus on family, friends, and thriving with MBC. Carlee Dixon’s Surprise diagnosis also inspired her to learn as much as possible about breast cancer and take every opportunity to educate friends and acquaintances about breast cancer prevention and the day-to-day reality. Today, Carlee is here to shed some light on how to best support those who are living with metastatic breast cancer. Carlee, welcome to the show.
[00:01:01] Carlee Dixon: Thank you, Adam. I’m really excited to be here.
[00:01:04] Adam Walker: I’m excited to talk to you about this because I think it’s so important for us to hear your perspective and just to know how to support and what to say and what not to say really too. So but let’s start with you. Can you start by sharing your breast cancer story with us?
[00:01:21] Carlee Dixon: Sure. So, I had just had my 53rd birthday, and it was in December of 2020, and at that same time, busy trying to host holidays and things like that. I went for my annual mammogram. I was so happy to receive the pink envelope from the mammogram center that said, come back in a year. You have extremely dense breast tissue.
We saw no abnormality, come back in a year. So that was right before the holidays and throughout that fall of 2020, I’d had a lot of aches and pains. I was pretty active for my age and, you know, I found one day, holding a plank in Pilates class, I just collapsed because I was in pain in my side. And I thought, “Well, let’s get a massage.”
I’ll go to the chiropractor. So I was doing all of these things. And then in January of 2020, January 14th, so less than a month after my mammogram, I sneezed and I broke my back. Cancer had weakened my vertebrae to the point that just the force of that sneeze broke that particular vertebrae. My son was 19, home from college, and I was laying on my office floor, and I was like, “Well, go get me a heating pad, and bring me some ibuprofen, and you know, I’ve got another conference call coming up, so let me just lay here and take it.” And then, you know, because he was wanting to get me to the ER, which did happen a few hours later. So in the ER, after a number of CT scans and MRIs, the young doctor who I know was very well meaning, but had really not learned a bedside manner, came in. My son was in the room and he said, “You have metastatic disease throughout your skeleton and your liver, and it’s not liver cancer, and it’s not bone cancer, but we don’t know what kind of cancer it is.”
And my 19 year old is in the room, and we’re both having a kind of a freak out moment. I was like, wait a minute. “Did you say I have cancer?” And he said, “Yes, and we’re just starting the investigation. We’re going to do our best to make you very comfortable” And I was shell shocked. I mean, and that is such a light way to say it.
So I immediately had surgery to fix the vertebrae, but we had counted 33 bones that had shown cancer in my body. So it was very extensive. Had a few days in the hospital, of course. And then all the investigation and we found out it was breast cancer. I had never missed a mammogram. Doctor said I had breast cancer between two and five years prior to my diagnosis. So my cancer wasn’t just so aggressive that in fewer than 30 days, it spread throughout my body. It had just been missed with imaging. And the interesting thing is I do have a family history of breast cancer on my father’s side that had been on my chart for 20 years.
And there was a lot of, there was a hypothesis that genetic breast cancer could not pass from the paternal side. It was only passed from the mother back 20 years ago. So anyway, I had been doing self exams in the shower. I wasn’t great about it, but I was doing them monthly or maybe every quarter, and I’d never felt anything. And when we found that first breast cancer, the doctor was telling me where it was, you know, and trying to show me. I was like, I’ve been doing myself exams. I haven’t felt it. And he said “Lie down and put your hand behind your head.” And when I did, that was plain as day and, you know, we don’t do a good job of educating people exactly how to do breast self exams. They can’t just be done standing up. So that is my diagnosis story. I am happy to report I’m doing very well. I have responded great to treatment.
[00:06:55] Adam Walker: That’s great. I love that. I love that. So, I understand you’re a part of Komen’s MBC steering committee and you’re a strong advocate for the NBC community. What made you decide to do that and get involved?
[00:07:08] Carlee Dixon: Well, I was in sales for 30 years and probably everyone who knows me would say I have a big mouth and a loud mouth. And really after I got through the shock and I began consuming everything I could about breast cancer and cancer in general, I thought “This is how I can really make a difference…” is I can become involved in the breast cancer community and I can advocate that women ensure they’re getting the right screening and they know how to self screen and so that was it. And I had participated many years in Komen’s Breast Cancer Walks, and they’re headquartered in Dallas, Texas. I live in Dallas, Texas. They were a household name to me, if you will. And when I saw all the resources that they made available to breast cancer patients of all ages, it was then that I decided they’ve got the fattest wallet, and even if I just get a share of that wallet, that shares bigger than most other organizations could provide. And so that’s why I decided to align with the Komen Foundation.
[00:08:37] Adam Walker: I love that. I love that. So, since being diagnosed, now I know you’ve heard a range of things that people who just have no idea. What to say to someone living with metastatic breast cancer. So, I wonder if you can tell us a little bit about that, why getting it right is important and how it can impact another person that’s going through the breast cancer experience.
[00:09:00] Carlee Dixon: Right. I think even many early stage breast cancer patients don’t really understand that metastatic breast cancer is stage four breast cancer. It means that it’s spread to distant organs in the body. So if breast cancer patients don’t know that, of course, so many people in the general public don’t even really know what it is or the prognosis or what treatment looks like. It’s not incredibly important to get it right. Frankly, I have learned that people who reach out do it with the best intentions. People don’t reach out to say something that might trigger me or upset me. People are reaching out because they care, but some of the things can be very hurtful.
[00:09:54] Adam Walker: Yeah. So let’s talk through a few specifics if you don’t mind. So like, maybe some examples of like, say this instead of saying that. So for example I know in the MBC community that you don’t prefer to be called survivors. You prefer to be called thrivers. Walk us through that and then maybe walk us through a few other examples, if you don’t mind.
[00:10:18] Carlee Dixon: Yeah. So the thriver community is and I think there may be, there’s probably metastatic breast cancer patients who don’t like that word either, but everyone with this diagnosis has faced the cruel reality. That you’re not going to survive it. At least no one has yet. I’d like to be the first, and I know there are more than 200, 000 other women living in the U.S. that would like to be the first, too. But, the science says we’re not going to survive it. But, finding a way to have a full and fulfilling life is thriving. That’s the definition of thriving. . And maybe it’s not climbing a mountain, but you know it’s taking your dogs on a 30 minute walk. And so thriving is, in my opinion, doing what you can do in a way that you’re still comfortable and is not causing any pain and puts a smile on your face.
[00:11:32] Adam Walker: I love that. I love that. I wonder, you know, can you give us some other examples of like, maybe don’t say this, maybe instead say this or even some examples of like, what to do, what to say, when to call. I mean, just something because it’s such a big thing that so many of us are fully unfamiliar with. And we just don’t have any concept of how to approach it. So kind of walk us through a little bit of that if you don’t mind to set the stage on this.
[00:12:06] Carlee Dixon: Stage 4 breast cancer looks a lot different than early stage breast cancer. Early stage breast cancer, there’s usually going to be surgery. Very commonly, there will be chemo, IV chemo where you lose your hair. You lose a lot of weight, you take on a gray color, and I think what gets those patients through is that they know it’s temporary. Metastatic breast cancer, we still have that. We have members of our community. who, because of their cancer, require IV chemo, losing their hair, and all of that. But there’s a large number of people in the breast cancer community who are taking a new generation of breast cancer drugs that really focus on slowing and trying to control cancer growth, delivering quality of life to the patient. So with that as the backdrop here, one of my favorites is, “Oh, you look great.” And instead of saying that, I wish they would say, “Oh, you look really nice today. You look really good today. How are you feeling?” Because if you’re going to see me out and about, in all likelihood, I’m going to make a little bit of effort. So I hope I always look a little better than I feel. But that’s one where so many people in this community and I understand this feel like that minimizes our day to day struggle.
So, so that’s one. Another one, “When do you finish treatment?” Well, again, back to that cruel reality, we never finished treatment; early stage cancer patients in chemo clinics around the world ring the bell after their last chemo treatment will never have a last one, right? No bell for us. So, asking when you’re going to finish treatment is kind of a knife in the heart, but instead saying, “How are you doing on treatment? How are you tolerating treatment?” That’s different than saying, “When do you finish?” And again, I don’t think people say this with, you know, meanness in their heart. They just don’t know. Another great example is “Oh you got diagnosed with breast cancer. My aunt just died of breast cancer.” So trigger warning. Let’s try not to talk about people dying of breast cancer in the first six months of someone’s diagnosis, at least. I mean, even Suzanne Somers dying a few weeks back. She died of metastatic breast cancer. It is just a constant reality of what is further down the road for these patients.
[00:15:22] Adam Walker: Yeah. Hearing you talk too, it sounds like well, I guess hearing you talk and hearing other guests on the show talk, it sounds like a lot of times what I’m hearing is that you want to be seen as a person first, not as a patient first. Is that a fair statement? Is that kind of how you see it?
[00:15:39] Carlee Dixon: Of course I see it that way and I want to be viewed like that by my medical team too. I want them to know that, you know, their efforts can put that smile on my face, can give me a weekend getaway, can do the things that you really want when you dream of retiring all the things you think you want to do. And just getting, maybe you just get some slivers, but yeah, being viewed as a person and a person who enjoys these things and isn’t just running back and forth to get another I.V. Is important.
[00:16:21] Adam Walker: And I feel like if that’s our, if that’s you know, an S.A.R. is in the supportive community around you, right?
I feel like if our perspective is to always try to see you as Carlee first, then it changes the way we ask questions or changes that, that’s where we say, “Oh you look nice.” You know, like that’s seeing you for you versus the other option. Being surprised by it almost. And so I feel like just that shift in perspective might help us. To phrase things in a better way to, to be more supportive, if that makes sense.
[00:16:58] Carlee Dixon: Yeah, and Adam, there’s 1 more thing that I would encourage again, especially within the first 6 months your friend, acquaintance, family member who has received this diagnosis. They need a hundred percent confidence in the treatment plan that they’ve selected. Whether that be a conventional treatment plan or, you know, maybe Eastern medicine or a more holistic approach to the disease. It is the amount of unsolicited medical advice that cancer patients gets is overwhelming. And so I have asked my friends and some of the information has been great that they’ve sent me and I say, well, when it comes time, when my cancer outsmarts what I’m on now, I’m going to look into this. But I think it’s very important for people who believe in alternative therapies or only in conventional medicine, ask the person who has the diagnosis. “Would you like to learn more about this?” Because the unsolicited medical advice makes you feel like, “Well, maybe I’m not doing everything right. Maybe I should change things.” And then I’ll think through it and I’m like, “Well, why would I do that? I had a stable scan earlier this, you know, a few months ago. Why would I change now?” So I think it’s important to ask permission to share that your opinions and that advice. And in reality that goes for things outside of cancer. When someone’s sick, if you don’t have an MD, like ask before you offer.
[00:19:05] Adam Walker: It kind of reminded me of people that like to share parenting advice, you know, and everybody’s got an opinion. And yeah, I’ll leave it at that. So, we’ve all been there. So, so I’m curious for our audience that has, do you have any tips on how to speak up or even if they should speak up when someone says something that’s not particularly helpful?
[00:19:31] Carlee Dixon: Well I do think that’s personal choice. My approach is on the, “If I didn’t know, I’d never know, you look great” to something like that is “Thank you so much for the confidence. It really means so much to me because I haven’t been feeling well.” Or I usually, I’m very upfront, so I will generally say my peace at the time. I know others who will just kind of alienate that person from their lives. Say “They upset me every time she comes over. She upsets me. I just don’t want to spend time with her anymore.” So I think what , I think whatever the patient feels you as a MBC patient You absolutely have the right to speak up. That’s not your personality, there are many other ways to address it. Alienating people is probably not the best advice.
But I think it’s other ways to address it are potentially keep a blog that your friends can read and they can keep up to how you’re really doing and really feeling. So they’re not coming in cold. When people say, how are you, tell them, “Oh, you know, barfed all morning, but I’m feeling a lot better now.” or, you know, whatever it may be. Of course there’s people in everyone’s lives that don’t get the hint. And the hint may be, “I don’t want to talk about it at all. I’m out trying to enjoy a nice dinner. I don’t want to talk about this.” Or it may be carrying a blue barf bag with you everywhere you go and letting them see this. “Oh, sorry about that. That’s my barf bag.” So they understand that what they see on the outside may be completely different than what’s going on the inside. I think for the MBC patients, whatever it takes for you to maintain your mental health, that’s what you need to do. Because the mind plays so important in living with this diagnosis. Your frame of mind, your attitude the way you engage with others, be true to yourself and people, they may not get it the first time. They may not get it the second time, but people generally are going to catch on.
[00:22:31] Adam Walker: Yeah, I love that. And it also occurs to me too, and just from conversations I’ve had in the past that preemptively setting ground rules up front can really be very helpful for people, even if that’s like an email that you just pre type out and say, like, “Hey, before we meet for coffee, here’s a few things you need to know,” you know, like, yeah-
[00:22:51] Carlee Dixon: And I have talked to some people who said, you know, “I have the three don’ts and three do’s. And these are the three don’ts that I don’t want you to do around me. And these are the three do’s that I want you to do for me.” Because people do, especially early in a diagnosis, they want to help. And I also learned when someone says, “Hey, I’m running to the grocery store. Can I pick something up for you?” I don’t care what it is, say yes. Because then they’ll ask again. But if you say no too many times, people are going to forget that you do need help.
[00:23:34] Adam Walker: Yeah. That’s right. That’s right. So, you mentioned, you know, people supporting, let’s talk a little bit more about that. How else can people support and care for somebody that’s undergoing treatment for breast cancer?
[00:23:46] Carlee Dixon: Well, there’s so much that people need, a treatment can really knock people down for days at a time. People with families at home, they need a meal, even if you just door dash it. But to take the burden of cooking a meal for your family when you feel so bad, that’s really key. People, I have a friend who every time she comes over, she says, “Alright, let’s do a lightbulb inspection because I don’t want you on a ladder. Let’s lightbulbs need to be changed. I’ll change them all for you.” I never dreamed that would be like something I would talk about on a podcast, but it is so helpful. And so people need rides to treatment. Almost everybody can drive themselves there, or a lot of people can. But a fewer number of those who could drive themselves there could drive themselves home.
Go with them to treatment. If they have doctor appointments, go with them. Because it’s kind of a lonely place and you’re there and you’re wearing the wristband. So everybody in there knows you’re the cancer patient and it’s just good to have somebody, it’s just that moral support with you. When you go to doctor appointments that not maybe not every doctor appointment, but ones that you know are going to be difficult or a treatment that you know is going to be tough for you.
You know, don’t close people out and you may rely on one person for that, you know. Maybe it’s your spouse or your sister or your best friend or your mother and that’s great. But if you have a group of friends who is offering, I would recommend, you know, kind of spread it out, let different people go because then those people will have more of an idea of a day in the life. And they can also help share your message.
[00:26:04] Adam Walker: Yeah. I love that. That’s great advice. That’s great advice. Well, Carlee, this has been fantastic. I really appreciate you giving us your perspective and just helping us to better understand how we can support you and so many others in the NBC community. Do you have any final words of wisdom or final advice that you’d like to leave with our listeners?
[00:26:26] Carlee Dixon: If you have a friend or family member and you’re really struggling, “What do I say?”, ask. Doesn’t take long for us to know what really lifts our spirits. And so, if you don’t know, ask. I think about all the times before my diagnosis and even things friends who have a death in the family, you don’t know what to say. I think it’s perfectly fine for someone to say. You know, I don’t know what to say, but I’m here for you and, you know, share with me what you’d like to. I’m here. I’m listening. That is, that’s a fallback that I don’t think will ever, you know, set you on the wrong course.
[00:27:17] Adam Walker: That’s right. That’s right. That’s great advice.
Well, Carlee, again, Thank you so much for your time today. And just thank you for sharing your wisdom with us today.
[00:27:26] Carlee Dixon: Well, thank you, Adam. I appreciate having the opportunity to represent, you know, this thriving community.
[00:27:35] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.komen.org. And for more on breast cancer, visit komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker, or on my blog, adamjwalker.com.