This Breastcancer.org podcast features Holley Kitchen, the metastatic “cancer lifer” as she calls herself, whose June 4, 2015 video about what it’s like to live with metastatic breast cancer went viral on Facebook and other media outlets. Holley was diagnosed with stage III breast cancer in 2012. In 2013, she learned that the cancer had recurred in her spine and other bones.
Listen to the podcast to hear Holley talk about:
- why and how she made her now-famous video
- her support group of other younger women with metastatic disease and why it’s so important to her
- some of the most common misconceptions about metastatic disease
- what she’s doing next
Running time: 27:04
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Show Full Transcript
Jamie DePolo: Hello, everyone, and welcome to this edition of the Breastcancer.org podcast. I’m Jamie DePolo. I’m the senior editor at Breastcancer.org, and we are very thrilled today to have an extra special guest, Holley Kitchen. In 2012, Holley Kitchen was diagnosed with stage III breast cancer at age 39. She had a double mastectomy and went through a year of chemo, radiation, and hormonal therapy treatment. In November 2013, she learned that the cancer had recurred in her spine and other bones. Before this diagnosis, she knew little about metastatic disease and thought that having a double mastectomy meant that the cancer could never come back.
To help educate more people about metastatic breast cancer, Holley posted a video she made last week on June 4, and I’m sure a lot of folks out there have seen it. The response has been staggering, millions of views, thousands of personal messages, and stories in media outlets around the world. Breastcancer.org is grateful that Holley gave our site a shout-out in the video, and we are so honored to have her as a guest on this podcast. Holley, welcome.
Holley Kitchen: Thank you, Jamie, thank you.
Jamie DePolo: I’m just going to ask you, and I know that you’ve been asked this quite a bit, but had you been thinking about making this video for a while? Was it just spur of the moment, like, “Oh hey, I really need to tell somebody what it’s like to live with metastatic disease”? Was it just that simple?
Holley Kitchen: Well, no. Well, yes and no. I can tell you that when I was diagnosed metastatic, having that punch in the gut, I didn’t want anyone else to ever feel like I did. So my goal was to at some point try to get the message of metastatic disease out there so that no one felt like I did. And quite honestly, I didn’t know how it was going to happen. Through cancer my faith has grown, and it was in a prayer time that the Lord put this format on my heart, and He said, “Go do it,” and I thought it was very strange. I listened, and I did it 15 minutes before we were supposed to head out the door for dinner with the family. So, that part was definitely spur of the moment. There was no editing. There was no, “Let’s retake that.” There was none of that.
Jamie DePolo: Okay. So the idea for the note cards, it just all sort of came to you?
Holley Kitchen: Absolutely. Like I say, I don’t know whether it was just given to me in a dream or just in prayer time but the note cards were a very clear message to me. I like to talk so I was kind of bummed that maybe I wasn’t supposed to spread the message with my voice, but I listened to that. I have used the term ‘lifer’ for myself because that’s truly what I am. I am a lifer in this. I’m not a survivor, and I never will be, so ending the video with lifer was very important to me.
Jamie DePolo: Okay. Now, when you were diagnosed, what did metastatic disease mean to you? Did you actually understand what that was?
Holley Kitchen: Absolutely not. I don’t know that I’d ever even heard the word metastatic, which is astounding. I jumped in, or actually I should say I was violently pushed into the cancer world when I was very first diagnosed. At that time I don’t believe the responsibility lays on your oncologist at that moment to say, “Hey, guess what, you’re going to be fighting for your life right now, but metastatic disease exists.” I don’t believe that should be your oncologist’s responsibility. Maybe that’s where my passion grew was that I wanted other people to know the word metastatic existed. I even talk to breast cancer survivors today and they’ll say to me, “Hey, what’s that meta word?”
Jamie DePolo: Oh wow.
Holley Kitchen: Yeah, that’s not okay to me. That’s not okay.
Jamie DePolo: Right. I guess this is a good point. Just in case anybody out there is listening and they’re not quite sure what metastatic disease is, we’ll tell you. It’s when breast cancer, there is a cell or some cells, they’ve moved into the bloodstream, and they spread to other parts of the body. [Editor’s Note: Breast cancer can spread into and through lymphatic channels, which eventually drain into the blood vessels (as well as directly through the blood vessels).] In the case of breast cancer, the most common places for it to spread are the bones, the lungs, the liver, the brain, and the lymph nodes beyond under the armpit area attached to the breast. Just so everybody out there knows what we’re talking about, and it happens the cells go through the bloodstream and they get to these other organs. As far as we know, doctors aren’t sure why those are the most popular areas for breast cancer to spread to, but it just happens to be that way.
Holley Kitchen: Right.
Jamie DePolo: Now, Holley, I know you didn’t expect the response you got. You said you went out to dinner and thought, “Okay, I put my message out there.” I guess two questions to that. If you knew that 46 million people were going to be looking at it, would you have done anything differently or no?
Holley Kitchen: Oh my goodness. There’s the side of me that says I probably would have done my hair better! But seeing the responses, seeing how people have reached out, if I get down to the nitty-gritty I don’t know that I would do it different, because evidently it worked. That is the most important thing. I have to go back to that. This is about metastatic cancer. This is about metastatic breast cancer, and people are relating to that. The messages I’m getting are all over the world and all over the spectrum of questions, so I don’t know that I would have done it different.
Jamie DePolo: Okay. Now given the response, too, what do you think this tells us about some of the knowledge gaps relating to metastatic disease?
Holley Kitchen: OMG is my best response. The gap is huge. It is huge. I have had women reach out to me that say they are a 2 1/2- year survivor and they have never had a recheck, and that is not okay. I have had women say, “I’m 50 years old. I’ve never had a mammogram. I just assumed if I got breast cancer I would have a double mastectomy and be done.” That is not okay. The education gap is huge, and it needs to be narrowed dramatically.
Jamie DePolo: And you’ve used this card in your video. Your understanding was that no boobs equaled no cancer. So I guess what I’m wondering, and I don’t want to dwell on this sort of, as you call it, a punch to the gut situation, but I guess I’m wondering -- so after you got that diagnosis, what was your thought process? Clearly there was shock, anger, hurt, fear, all those kinds of things. Then was it one of education? Was it one of action? I guess I’m trying to think that maybe what you went through could kind of help somebody else who’s going through the same kind of situation.
Holley Kitchen: Right, right. At first I was in complete disbelief and confusion. I didn’t understand that I had removed all of my breast tissue, gone through chemotherapy, gone through radiation, had a hysterectomy, but that breast cancer was still growing in my body. I had no idea that 30% of women with breast cancer will eventually metastasize. I didn’t even understand that the cancer cells in my bones were actually breast cancer when my doctor said it. I thought it was bone cancer. I was clueless to the science behind metastases, and so my risk as an earlier stage patient -- everything flew out the window for me.
Jamie DePolo: Did you feel like you had to educate yourself? Did you find some resources out there? Did you talk to different doctors?
Holley Kitchen: My sweet, loving, endearing, lovely oncologist stared me back in the face when I said, “So is this bone cancer?” She said, “All right, let me discuss with you about metastatic cancer.” And so I did have, and still do have, a very good relationship with her. She educated me in a brief 15 minutes about what metastatic cancer was. She didn’t want me going out there just on the Internet grabbing any little fact I could, so she highlighted some very needed bullet points I needed and even delivered the message to me of, “If you go out there on the Internet, it’s going to tell you, you have 26 months to live. That’s statistics.” She gave me all ramifications, the whole Pandora’s Box of metastatic breast cancer.
Jamie DePolo: That’s great. Now, I also know you said that you’re being flooded with questions from other patients, and you don’t feel qualified to answer them, but are there certain questions you’re hearing over and over again?
Holley Kitchen: I shared just a few minutes ago -- some people are giving me personal messages, not even just breast cancer -- but they’re asking me what my treatment was, which I feel like sometimes people think, “Oh, she didn’t do what I’m doing so I don’t have that risk.” So, I’m getting that, I’m getting, “What was your treatment?” Of course I’m also getting people telling me they have the cure-all for me or the magic cure. I’d like to just delete those, but people are kind and they mean well, but I have complete faith in my doctor.
Then questions of, “How often should I get rechecked after I’m done with breast cancer?” There’s people reaching out, like I said, 2 ½ years later. One woman is currently in chemo and she said, “OK, when I’m done, how often should I get checked?” Those are kind of the reoccurring questions I’m getting. If they get too much more difficult I’m going to have to defer because I’m not a scientist, I’m not a researcher, I’m not a doctor. I’m just a patient. And my oncologist is tired of answering my questions! I’m just kidding.
Jamie DePolo: No, of course not. There’s never a bad question. But it is almost a little sad and scary that people don’t feel they could ask their doctors those questions.
Holley Kitchen: Right. I even had a woman make the comment to me -- because I had a picture on my Facebook page of my doctor and I at, actually, a breast cancer fundraiser, we were arm-in-arm and smiling -- and she said to me, “You know, I’m a metastatic stage IV patient but I don’t have that kind of relationship with my doctor.” I thought to myself, “Well, you need to.” I think you need to have a good relationship, a trust, a bond with the person that is giving your care to you, because they’re not just a doctor writing you a prescription. They are someone that has your quality of life in their hands. That’s one thing about my doctor is -- she’s everything. Yes, she may write me a prescription for chemo, but she’s also giving me marriage advice, she’s giving me children advice, she even gives me potty-training advice.
Jamie DePolo: Excellent! I saw the picture you posted on your Facebook page when you got your scans and how when you came out the team was holding up note cards.
Holley Kitchen: Yes. That was very, very kind. You get bonds with people through this whole lifer phase, and you see the same faces. It makes things less intimidating. It makes things less grueling. It makes you feel like you’re human and that you matter. That’s the kind of hope we need in this metastatic world. We need the smiles, the warmth, and the love no matter if it is a PET scan, chemotherapy, or an X-ray. We need it all the way around because we’re humans, we’re moms, we’re business owners, we’re workers, there’s even dads. I never want to leave out the men in this fight, either.
Jamie DePolo: And that’s a good lead-in, because I was wondering, a lot of people say, and we hear this on our Discussion Boards and people have said it to me, “I don’t know what to say to someone who’s been diagnosed with metastatic disease. I don’t have the words. I’m not familiar with it.” So, I kind of have two questions for you. What would you tell people not to say, because I know there are things that you don’t want to hear, and what would you tell people to say?
Holley Kitchen: Okay. I can tell you that most of the things in my video I would tell you not to say. Now, I believe people are kind and loving and caring, and that’s why they are saying something. That’s why in my video I said, “I’m not saying this to shame anyone,” because let me tell you, my friends have reached out to me and said “Oh my gosh, I said that to you once, and I’m so sorry.” And that wasn’t my point in saying it. It just gets a little tiresome, and there are still so many misconceptions out there about metastatic disease. The crazy cure-alls are a little hard to take every now and then. It’s not about an apricot seed or asparagus, or eating this or not eating that, or taking this pill. “But you look so healthy,” or “Oh, you still have your hair but you’re in chemo.” Those are the things that are kind of difficult to take, because you realize the misconception of metastatic disease is out there.
To tell people what do you say to someone with metastatic cancer, I don’t know that there is a blanket statement. I think you’ve got to know the person. I think, “Man, I’m thinking about you,” or “I’m praying for you,” but really pray like I said in my video. Maybe just reach out and do something kind for them. “Hey, can I run to the grocery store for you?” We are tired. We are tired all the time. Yes, every mom is tired, but a metastatic cancer patient is super tired.
So, I would just say try to be as kind as you can and just listen to your heart. If you happen to say, “Keep fighting,” it’s okay. I don’t want anyone to think to be silent to metastatic patients because we really do want to hear from you, so if you happen to say something wrong, don’t think it’s wrong, just know sometimes we might roll our eyes at you.
Jamie DePolo: That’s fair, because you see a lot when somebody is diagnosed with early-stage disease, first diagnosed, there’s a lot of, “Let me bring you a dinner, let me clean your house, let me do these things for you,” but when somebody is metastatic and it’s chronic and it’s ongoing, I think people don’t know what to do. Like, should I help, does she need it, I don’t know. I think your points are very well taken and can be very helpful to some people because yeah, offer to help, and if the person doesn’t need it the person will say thank you, but if they do they will be very grateful and accept you for it, take you up on your offer.
Holley Kitchen: Right.
Jamie DePolo: So, you have now your support group, as you call it, Holley Kitchen and the Cancer Lifers.
Holley Kitchen: Yes, and we have some followers, yay!
Jamie DePolo: That’s great! Tell me what that support group means to you. What benefits do you get from that?
Holley Kitchen: Well, the women pictured in there -- let me go back to the day of my mets diagnosis, because the same day, my oncologist, once she delivered the news and informed me about what metastatic disease was, she kindly walked out the room and said, “I’ll be right back.” And when she came back in, she had her little Post-it note, and she said, “Call this girl. She’s in a local support group and you need to get connected with them.” Because I never connected the first round. I didn’t think I needed support. I just thought, “Eh, it’s breast cancer. I’ll get through this. I don’t want to associate myself with you cancer people,” which I couldn’t have been more wrong about.
She directed me to the Breast Cancer Resource Center here in Austin. It’s the Lotus forum group. It’s a group for young stage IV women. Meeting them immediately calmed my panic and gave me such hope. I walked in the room and they were laughing, and I think I thought to myself, “Why are you guys laughing? You’re dying.” Some of the women have been thriving for years with the metastatic diagnosis, and that is hope. They’ve helped me renew my hope in a full life despite my disease.
We share lots and lots of laughs. They get me. I can send them one text and they understand me. Having a group that understands this on a personal level, it’s meant the world to me. The fact that they’re all younger, many with small children just like me, has been very important. And that we’re younger metastatic patients, we face unique challenges while going through this. They helped guide me on talking with my kids about cancer. We discuss taboo topics, like with our marriages and things. We even discuss sex! I won’t lie, because it changes. We definitely have laughed together more than we’ve cried, and that is the most important thing I want to say. Very, very, very thankful for the BCRC group, for sure.
Jamie DePolo: That’s great. You said that because they’re all younger, that makes it so important because I’m sure that whatever the challenges you’re facing, the questions you have, are very different from somebody who’s, say, 75 and metastatic.
Holley Kitchen: Absolutely. In fact I’m the old lady of our group. I’m the granny of the group at 42, which is sad. But yes, because we’re all raising children and we have struggles in our marriages and with our families that don’t get it, so yes, we’re in the same stages in our lives. That part is so important. I hate to say that I’m the grandma of the group. That’s sad for me. I’m definitely not the wise one of the group, as a side note!
Jamie DePolo: I’m sure you’re all very wise, very wise. From your view, what are some of the most common misconceptions about metastatic disease, because I’m sure you’ve come across some of them or people have just asked you questions that were kind of not making sense?
Holley Kitchen: Absolutely. I’ll try to curb this to a 5-hour discussion. I think probably the first one is that I’ll have an end date to my treatment, that I’ll be done, and I’ll get to celebrate survivorship. That’s not true. But on the other hand, I’m not going to die tomorrow.
That all the cancers are the same. If it works for you it’s going to work for me. Not true. It’s a hard thing to hear as a cancer patient that every cancer is different, but it’s also a lifeline that not every cancer is different. That’s very, very hard.
Many people don’t understand the need for constant scans and blood tests and doctor’s visits. They don’t comprehend how much time and energy is taken from my everyday life for me fighting cancer, which takes away from my ability to work, which takes away from my ability to play with my kids, which takes away from my ability to spend one-on-one time with my husband. Those are probably my top misconceptions, and I won’t bore you with the other ones.
Jamie DePolo: Oh no, it’s not boring. Looking at it, it’s almost like having a job.
Holley Kitchen: Absolutely.
Jamie DePolo: Like being treated for metastatic disease is like having a job. You have to stay on top of your treatments. You have to stay in contact with all the different people on your team because you have an oncologist, you may have somebody who specializes in the scans, you may need to see your surgeon, and then you’ve got all the other people that do all the other tests, and then you have to keep track of all your results. I’m sure you’re probably doing some research looking for clinical trials or the latest treatments or keeping up with what’s going on. So yeah, there’s a lot to do.
Holley Kitchen: Absolutely, and let me note that it is a job that I pay very good money for, not that I’m paid money for. It is totally a second job, which makes my two children number two and three because my main job has to be to stay alive for them. And that kind of is a downer. I want my kids and my husband to be number one, and the ugly C-word has to be my priority. So yeah, that’s for sure.
Jamie DePolo: You’ve done a great thing with this video. I know you’ve made a lot of people more aware than they were before. Do you have any idea what is next, what you have planned? Have you been invited to speak anywhere? I know you’re doing a lot of interviews.
Holley Kitchen: I am. I was totally, totally, and completely unprepared for the attention and popularity of this video, so I’m still trying to figure out where I go from here. I’ve got to be real and I’ve got to remember that I’m still a metastatic stage IV cancer patient and a mom and a wife, so those things really have to remain my priority and my number one. But I’m excited to bring more clarity to metastatic breast cancer and continue to promote an increase in the amount of funding and research dedicated to stage IV breast cancer. I hope to educate others on the incredible financial burden people face with this diagnosis.
Even with health insurance, cancer patients are twice as likely to file for bankruptcy, and I don’t think people know that in the general population. Since I’m a lifer, I have very large medical bills for the rest of my life, and no one should have to choose between cancer treatment and sending our kids to summer camp.
I have to keep my focus on cancer and my family, but I will be honest and let you in on a secret that I don’t think I’m done. In the last probably even 6 hours -- letting you in on a secret, girl -- I have had it put on my heart maybe what I do next. My main thing is not to lose hope, not to lose the face of metastatic cancer, and to know we are alive and we are out here and let’s do what we can together.
I am trying to respond to all the Facebook messages because I think it is very important. I don’t promise to answer every one with the magic cure-all. But if you’re reaching out to me and you say, “Look, I want to know this or where you get inspiration,” please just be patient with me and know that I’m a human, I’m a cancer patient, I’m a mom, and I’m a wife, but I’m a lifer with you. If you’re listening to this and you’ve sent me a message, I’m going to reach out. Don’t lose hope in me and don’t you dare lose hope in this fight. I want to remain real, I really do. That’s the bottom line. I want to remain real.
Jamie DePolo: That’s amazing. That’s wonderful, and I don’t think we could all ask for anything else. I will say, too, it’s very brave of you to put your face on metastatic disease. I think that, to me anyway, that’s part of the popularity of your video is that you were brave enough to stand out there and say, “Here, look, this is what metastatic disease looks like.” Because I think some people, I wouldn’t necessarily call it shame, but they don’t want to face it every day. They don’t want it to be the first thing somebody thinks about. But you were brave enough to say, “No, this is what metastatic disease is.”
Holley Kitchen: Well, I don’t feel brave. I’ve got a lot of brave people in my life. My other lifer girls, they’re just as brave. I will take what I can get if I can help someone. Honestly, my goal in the first video, I told my husband I want to help five people.
Jamie DePolo: So you met your goal, you met your goal.
Holley Kitchen: I did, I did! Maybe I ought to make my next goal to reach 10 people.
Jamie DePolo: That would be great. Well, Holley, I know you’re busy. I want to thank you so much for sharing your time with us and all the Breastcancer.org listeners today. We wish you all the best.
Holley Kitchen: Thank you, Jamie, thank you.
Jamie DePolo: All positive vibes to you, and we can’t wait to see what you’re going to do next.
Holley Kitchen: Yay! Thank you so much, Jamie, and if you want to direct people to Holley and the Cancer Lifers, that would be awesome.
Jamie DePolo: Sure. That’s your Facebook page, right?
Holley Kitchen: Yes, ma’am.
Jamie DePolo: Okay, Holley and the Cancer Lifers, find them on Facebook, and again, Holley, thank you for being our guest.
Holley Kitchen: Thank you, Jamie.