Living with Metastatic Breast Cancer

I believe it was   in the spring of 1989 I developed breast cancer. I discovered it with a lump that I found myself. And   before I knew it, I had my left breast removed. I started chemotherapy, radiation-- six months of chemo, then, I think, six weeks of radiation at that time.  Then, a year later— almost a year later I had reconstruction surgery. And I lived, at that time, I was Stage three because it had started-it had spread to my lymph nodes.  I think two of 21 were positive in my   axillary lymph nodes. So, that was my beginning experience with breast cancer. And quite frankly, after five or 10 years, I thought I was done with it. And then, 30 years later, [DATE]of 2014 I went to the emergency room. I was in a pinochle tournament, and I wasn't feeling that well, even though I played. And I said, “I’m not,” you know, “my breathing is not right.” And so, I went to the emergency. I called my doctor, he told me to go to the emergency room. And they discovered that I had pneumonia. Well, when they did the chest X-ray, they also discovered that the breast cancer had spread to my bones. And that's when they notified me. And of course, I went through to the oncologist and whatnot. And they said it, I had stage four metastatic breast cancer at that time.

I had called my doctor and I said, "You know, I feel like it's something happening right here in my chest, in the middle of my chest." I say, "It feel like it's some cancer right there, and I, I just don't feel right." We got the PET scan, sure enough, it was in my intermammary glands on my right side, all down, right up in here and some in my sub-clavicle. It was in the lymph, it was in the lymph nodes right here, and in my intermammary glands.

And my whole family, my sister, and all the cousins, the boys were all here. And—so they were all upstairs and downstairs playing games. And we were doing a cookout or whatever. And so I came down here because it was quieter. And I took the phone call. And she’s like—and I said, “hey, [NAME]. What's up?” And she said, “I got the results back.” And I just said, “oh no.” And she’s like—She just knew I could—just give it to me straight. Just tell me what's going on. And she said, “Nikki, the cancer is back.” And I kept thinking, ‘there's no way. Like I feel fantastic.’ And I was like, “like skin cancer? Is that what this is?” And she said, “No. It's breast cancer again.” And I was like, ‘ugh.’ So I said, “OK. Well, when—when should I come in and see you?” So we'd set the next day or two days or whatever it was. And I hung up the phone. And I just walked outside to the front. And I just walked up the road. And I sat on the curb, and I cried.

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We met with the oncologist.  And she said, “you know, we'll do some scans. But it’s—we have to figure out what's going on.” So we did full body scans. And I remember my sister and [NAME] my husband, were both in the room when we met back with her. And she said, “It's Stage 4. It's gone through your bones.”

It never dawned on me that it could really be something serious. I thought, you know, best case scenario, when I first met the physician, and they said there was a lump and it was cancer. I thought, “OK, well, I'm going to get a double mastectomy. And they're going to give me matching B cups, and I'm going to maybe get a tummy tuck. And I'm going to look fabulous by the summer, and this is a non-issue. And I'll move on with my life and never worry about it again.”

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And when I did the MRI and   PET scan, it came back that I had   cancer in my liver and my bones. At that point, that was [DATE] of 2014, and my daughter at that point was about 18 months old. So,   I immediately   started googling statistics. At the time, I was 33 and   didn't kind, didn’t really know what to expect. I found one statistic that said that de novo stage 4IV patients with liver mets   had an average of six months. And so here I was with this arm that was now swollen with a drain in it and an 18-month-old that I couldn't hold. And   that was probably harder for me than any other aspect of it was, “Oh, my gosh, I have six months to go, and I literally can't hold my child now.”

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We did talk with   my older daughter about those things. And of course, she was 15 when I was diagnosed, which is an emotionally chaotic time already. And   so at the time, we had, we had a very tumultuous six months. Because we had already moved. We bought this farm. I changed jobs, careers. And so, I was traveling a lot more for work.   We got full custody of her and I got cancer. And all that happened within about four months. So, no pressure. So, she was looking at this like we just got everything settled. And she was here full-time, and now, I'm going to die. And think that was a very black-or-white thing for her. And so having to kind of swallow what I was terrified of with my diagnosis and say, “You know, I'm in good hands. There are treatment options. I have a lot of options ahead of me. It is a scary-sounding diagnosis, but, you know, there are people that are doing really well,” and kind of presenting it that way.   In that, yeah, we need to be prepared, but we're going to keep living life. And we're going to try to take it one step at a time, one day at a time.

I finished my oral chemotherapy and went on vacation. Came back from vacation, and I was having difficulty catching my breath. And when I did take a deep breath, I was having some pain. So, the oncologist told me to go to the ER and get that checked out. It came back that the cancer had spread. So, that's back at Stage 4, and there's no cure for it anymore. It won't ever be in remission. I could have 10, 15 years. They don't know. So, that's freaky a little bit because I'm only 36 now. That's still way too young. You know, ten years, I'm in my 40s. It's changed my life plan, you know?

There’s so many opportunities for people that have metastatic breast cancer. Johns Hopkins has a wonderful retreat that people can go to for a weekend with their caregiver.   I tell people about these kinds of things. Casting for Recovery, they flew me- took me, they paid for a weekend for me to learn how to do fly fishing for a weekend. And it's a fun thing for other people that have   you know, breast cancer. And they do that regionally. You have to apply for these things, but, you know, you apply, and if you're accepted, it's a wonderful thing. You know, in DC, they have a wonderful organization that gives you a retreat–a very expensive retreat–but if you apply, you're eligible if you have metastatic disease. So, I mean, there are lots and lots of resources for people that have metastatic disease. It's not necessarily a death sentence. And   even though you're terminal, you can live life to the fullest.

Then when I got my most recent metastatic diagnosis. I have been doing really well. The treatment has been, it's entirely tolerable. Really nothing symptomatic at all. I have a little lymphedema but lots of people have lymphedema. I joined a dragon boat team for breast cancer survivors, and that has been one of the most wonderful experiences of my life, and I never would have had it if I hadn't had cancer. Just this amazing group of fierce women that are athletes. And we all support each other. And we have a lot of fun. And we work really hard. So that's been very positive.

I've been lucky that I've been stable since my diagnosis in 2015, with bone mets to the spine. I am oligometastatic, which means that I have a very low disease burden. So my prognosis, as far as metastatic breast cancer goes, is like really the best possible situation, is how my oncologist in [LOCATION] framed it. But that still doesn't mean that the prognosis is all that rosy. I'm reading, a lot of research that people with   oligometastatic breast cancer, bone-only mets, are living longer than, say, people who might have organ involvement. I've been lucky in that regard that I might see 10, 15, possibly even 20 years post-diagnosis.

So, when people see me, they have no idea I have Stage 4 cancer, that I've lost both my breasts, that I look like I lost a war with Edward Scissorhands. There's so many scars and holes in my body, and I still wear a swimsuit. I don't care if people see my scars. I don't care if people hear my story. Like, I want them to see, like, cancer doesn't define who you are, in my opinion. I don't think it changes who you are. I think it exemplifies who you are.

There's this nice bell on the outside as you enter into the oncology center on the outside of the building. And the the-tradition is that when you have finished your chemotherapy, you go outside, and you ring this bell. And the nurses and everyone, they celebrate your last day of chemotherapy. And one day, I went outside, and I took a picture next to this bell, and, you know, just because I know the tradition of that bell. And to me, that was not a joyous picture. Because I knew in my mind that I was never going to be able to ring that bell, that I was never going to be able to say I'm finished chemotherapy, I don't have to do it anymore. And even though I took their picture and all like that, that was disheartening to me is to know that with metastatic disease, you're never going to ring the bell.

I think the average person doesn't realize that cancer treatment doesn't stop for a metastatic patient. Because people all ask, “Oh, you're still doing treatment? I thought you quit that. I thought you stopped.” No. We just do this forever until we don't. Then we do another treatment or we don't. And when that bell rings, it's a heartbreaker. Because when I ring that bell, that means I've finished a treatment. I can't do again.

I mean, I live, I live in the South. I live in a rural area. And I still, I met with people, when I'm very open about my disease and not in a way that is designed to garner sympathy, but just to raise awareness. Like, there's a lot of people with seemingly invisible illnesses. We should talk about that. We should acknowledge that. And some, in a lot of ways, metastatic breast cancer in a young person especially feels like an invisible illness. Because, you know, I could have a handicapped placard on my car. But if people saw me walking from my car to Walmart, they would be, “you're not handicapped. You can walk. There's nothing wrong with you.” Never mind that “well, I got mets in my sacrum, and my back hurts, and my arms hurt from metastatic disease.” And, you know, but nobody’s going to, you don't wear a NASCAR t-shirt that says, “here's all the diseases I have in my body that you can't see on the outside” because I'm not limping or in a wheelchair.

Most people would never guess that I have metastatic breast cancer.   I can turn on really easily, and I can keep it together when I'm with people. What people don't see is that after my school week, I'm collapsing in my bed. Or I come home, and I turn on the heat pad. That's, I think, something that maybe a lot of people with chronic illness or maybe other terminal illness might be able to relate to if they essentially are walking around with an invisible disability. It's a little hard sometimes when the people around me don't always grasp what my diagnosis means on a day.

One message I would give, I guess, if there was such a thing as a general public, I would say, please don't say to a person with metastatic disease, ""You look so good." Or “But you look so good.” I don't like hearing that   from anybody.   because it negates the fact that I do have the disease and that I'm living with it. So, I prefer not to share-give information--like, you know, I would share with someone, “I'm there for you. “I would say things like that, like “I'm there for you if you need to just talk sometime, or   you know, you want to go somewhere or do something that has nothing to do with your illness, just call me and let me know. I'll be glad to be there for you."

But so, I think that the pink movement helped with that, and it helped to normalize it a little bit and give a little bit of sisterhood to that. But now, it's sort of come to bite us. Because now, there seems to be a sisterhood in the early-stage world, where you're in it, and you fought it, and you’ve beat it, and yay. But the metastatic people aren't part of that conversation, because we're still in it, and we're always in it. We're in it until our treatments stop working. And when that bell rings, it's a heartbreaker. Because when that bell rings for me, when I ring that bell, that means I've finished a treatment I can't do again. That doesn't mean I'm done. So, so, that's, that’s kind of a microcosm of, of where the pink movement is juxtaposed with the metastatic patient.

Is there a movement for women with metastatic disease?

There is.  And if we could quit dying, we could get a lot more done. We have lost such powerful advocates in the past year or so. Pretty much all of the founders of an organization called metup.org are dead. One of them just passed away within the past month. We lost a lot of wonderful women in October, ironically, Pinktober. So that's, that’s the hardest thing, because the metsters can't get it done. We can't get it on ourselves. We have to have early-stagers on board with us. We have to have people that don't have cancer on board with us to understand the need specifically to save patients who are already sick. Because prevention is not going to help us. Being vegan is not going to help us. Drinking more water, getting exercise, thinking positive, none of those things are going to stop the disease at all. We need researchers to help us do that. They need funding. We need to make an appeal to where that is as popular is going to buy a pink blender. And the thing with the pink stuff is, more pink blenders doesn't mean more dollars.

The doctors can't give a time frame. So, I think that's what's, that’s what’s the scary part, because, like, do I have 10? Do I have 15? Do I have less?

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Do I start putting money aside for the funeral? I try not to think like that. But I don't want the burden for my siblings to take care of all this stuff.

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I try not to think about it, because they don't want to. But, you know, I'm a planner. I have to make sure everything's in order for them, because you have to get all this stuff, you know. I have all this stuff, the house, my retirement, my state retirement, you know, bank accounts, all the stuff.

I find myself around a lot of survivors. Only a few that's like, that's in the chemo doing it. I just, they make me so happy because they're survivors. I wish I could, you know, be around some that's living with it, like how do you get out the bed? My question is how you get yourself out of the bed? How are you and your family communicating when you're so tired? Or have you talked to them about if you died, when, I don’t know! I just want to ask you some for real questions.  And I'm scared because I want to know some for real answers. I don't want to beat around the bush because I'm way past beating around the bush. I've been dealing with this coming up five years in March.

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Like, if you're single, intimate stuff, like how do you feel in a lot of things. Like, I had a friend, it's not like a boyfriend, but I feel like they think you're going to die, so they don't want to be close to you knowing that you're going to die. So, you be in the friend zone, you know? I want to know how does that feel, is, you know. Not somebody that's married, because they going to be there for each other. If somebody is single, these is my questions. Somebody that's single, children going off to college, you might be in the house by yourself, you know? How, how would you do? You just, just take life has, how it gives you? Just take it and be happy for what you have? I don't know. I don’t, I don't know. I just want to know. It’s no, and when I get in the group, it's just, it's happy. And I'm not wanting to be a sad thing. I just want to know real stuff.

Another aspect is, for me, as a single woman, I have a close family, my sisters and my nieces and nephews. But I deal with, you know I wonder, because I have visited my friends who've had metastatic disease or whatever, and I've visited them in hospice, I wonder, for myself, I struggle with the issue of, who's going to be there for me kind of a thing. Because I don't have a husband or children, I do struggle with that part. Like, if it was just a matter of going to hospice, you know, I dealt with my mother in hospice, so I know the issues related to that. But I was there for her. You know, and so when you, you know, when you have, when you are alone, per se, or you live alone and you are alone with metastatic disease, that’s an issue that you struggle with is the issue of who is going to be there for you when you have to be at that end stage. My friends that have had metastatic, they had a husband or children or something like that. And that's who dealt with them for their arrangements and all like that. Now, I have a last will and testament. I have the Five Wishes. I have a will. I have all these things. I have people in place that will do all this. But I'm talking about, you know, when you're there in that bed in hospice, you know, who do I look up to see? And that's what I struggle with. Even though I'm close with my church family, my regular family, all like that, you know, that's what you struggle with. I'm close with my God. And so, I know that, ultimately, He's going to take care of that. But humanly, you wonder, you know, you deal with the loneliness of that final hour, those final times.

I want people to be present. Just be present. Don't, don’t give me a gift basket, throw it at my house and run away. Don't send me a card. Show up. Come here and help me do laundry. You know, everyone's got laundry. We all need help folding laundry. Come here and do laundry with me. Have a cup of coffee with me. Let's go ride horses. Let’s go do, just be here with me.   And that's the most important thing. But then with my metastatic friends, I feel like I keep them at arm's length ... Like there's so many unspoken things that we already understand.

You know, God always says he'll never give you more than you can handle. You'd be surprised how much you can actually handle. And when you have babies, and you have husbands, and you have friends, and you have great community, it’s so easy to just--that's where my focus is. Like, tell me what the treatment is. Tell me what my side effects are or could be. I'll see what I get. Let's just go. Like that's just kind of always been it. So, things kind of stayed pretty stable for a while. And then, we kept doing scans every three months, and it was kind of explained there's maybe at this time, there are four different drug options. We're hoping to get one to two years out of each one. So, I remember when I was in the office with my sister and my husband. And she had first told us I was Stage 4, and my sister had asked, “what does that mean? Like, what does that timeline?” And I said, “oh no. Uh-uh. Like no one gets to count my days.” And it was funny. I had a saying at that point which a friend of mine then made a T-shirt. And it says, “God has numbered my days, not cancer.” And I said, “No matter what you think or what you say, there's nothing out of the possibility of God healing me or changing all of this.” So, you can tell me what you expect, just like the side effects. You can tell me what I could get. But that doesn't mean it's going to happen, and that’s where my faith is. God is in control of my life.

But the most, the thing for me that was the most impressive was when I got my third diagnosis. I said, "I can't do this myself. Somebody - I need help." And I picked up the phone, and I called and I said, "There's got to be a psychiatric department. There's got to be support somewhere." I left a message on a voicemail, and I was not called back for days. When I was they said, "There—we don't have—there, there are no bookings. We're completely booked. We can't see you." And when I switched hospitals, they were so much about the support. I can go see a—they assigned a social worker to me. And she came to every single one of my treatments, she called me once a week, and she said, "Do you want to see me?" She talked to my kids, talked to my husband, and she talked to my mother. It was just—it was so, so helpful. And then, with this diagnosis, I was like, "OK, get me a shrink." I got to have a nice visit with the psychiatrist, but I haven't seen her for a while because I've been doing well, but that was the main difference. What really was that kind of having someone to talk to.