Nikki
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Nikki was a young, active mother of three when her doctor found a small breast lump during a routine checkup. Since her mother “had a lot of lumps,” Nikki was initially unconcerned. But then came the ultrasound for that lump and for a larger lump she had had since breast feeding. The technician “went pale” and Nikki knew it was “not good.” A biopsy confirmed Stage 2 breast cancer with one positive node. She wanted her treatment to be “as aggressive as possible,” starting with chemotherapy. In theory, hair loss was “not a big deal,” however when her long blond hair fell out, it finally hit that she had cancer and it was “going to change” her life forever. On the other hand, Nikki and her fun-loving, extended family taped long blonde mustaches made from her fallen hair above their lips—and her nephews buzzed off their hair in solidarity. Alas, the chemotherapy did not work, requiring the removal of “a lot more skin” during the double mastectomy. Nikki recalls waking up in tears from utter pain, then went onto painful rounds of radiation and breast reconstruction—reminding herself that, “when I'm 80, and everybody loses to gravity, I'm going to be perky.” An oophorectomy put Nikki into early menopause—"a small price to pay,” she says, but two endocrine therapies resulted in hip-locking pain, which was incompatible with her life and she paused them.
Nikki notes “recovery was as good as it could be” with the support of family, friends and community. She shared her cancer diagnosis with her children right away to make it a less “scary thing,” and delivered on her promise to “figure it out.” In the midst of difficult treatments when she felt like staying in bed, she often chose to play with her son when he said “I don’t want to do cancer today. Let's do basketball instead.” Other keys to living through and beyond recovery were the support of her husband, family and community. Her deep faith helped her “to just focus on something else besides the awful.” Humor, she believes, can take away cancer’s power and she can find the “funny in pretty much anything.” Nikki got to put cancer behind her; life went on with her family, her community, and her work.
Then three years later, Nikki had a persistent rash which eventually led to a Stage 4 diagnosis—her breast cancer had metastasized to her bones. Treatment includes oral chemotherapy, IV chemotherapy, and several drugs. She decided to remove her reconstructed breasts to reduce further risks. When the prospect of prognosis comes up, Nikki asserts that, “God has numbered my days, not cancer… and there's nothing out of the possibility of God healing me.”
Nikki reports that “things are holding up.” Even with her nonstop treatments, metastatic cancer has not changed her life. She travels for work, has date nights with her husband, goes on vacation, and does the things she wants. Nikki is glad people looking at her have no idea she has Stage 4 cancer, while underneath she looks like she “lost a war with Edward Scissorhands.” That cancer, hidden to the outside world, does not define who she is. Nikki would like others to know that cancer doesn’t change “who you are” but “exemplifies who you are.” Her sense of humor, unwavering family support and strong sense of faith have played a large part in Nikki’s story and perseverance, living on her belief that “God is in control” and that has made her “so much stronger.”
Nikki is amazed that her various clinician teams communicated well with her and with each other.
Nikki is amazed that her various clinician teams communicated well with her and with each other.
So, the amazing thing is, you have the reconstructive team, and the radiology team, and the oncology team. And they're all different, but they're all working for you. And so, they were super transparent, which I appreciate. That's what I wanted. I wanted all options, the good, the bad, and then we still were in control. We got to make those choices. And what I liked was that you know, they would come in. And she'd say, "[NAME], we sat down on what to do with you because you're a little bit different. We don't all agree. And I'm going to tell you what our plans were and why some of us liked this one, and why some of us like this one, and what we didn't agree on." And so, we would talk through all of it, and that I liked. I liked the super transparency, talking about what was the positive and negative to these two plans, and then, "What do you want to do? What are you comfortable with?" So that—that I really like. They were just really honest and open, and they took control when they needed to. But then they also knew like we ultimately had the decision on what we wanted to do.
Nikki set up payment plans to deal with her accumulating bills.
Nikki set up payment plans to deal with her accumulating bills.
I think, I mean, insurance is insurance. No one likes that, right? You get all these bills coming in and people calling me, and I just kind of put my foot down and was like, "Well, you all get 20 bucks a month." And they said, "That's not enough." "Well, you can have nothing if you want." But—so, I set up payment plans, everybody was getting a set amount every month. It was just—and then they're fine. They really are. You know, the hospitals are fine with it. You know, I think the insurance kind of usually would push a little bit. But, you know, you have so many people and so many appointments, and so many doctors, and so many bills that it was just like, OK. I made myself a chart. I said, "Everybody is getting this amount whether you like it or not," like, "I'll start paying, but you're not getting the farm."
Nikki’s children kept her going.
Nikki’s children kept her going.
So, I had my first chemo treatment. And I was-- probably knocked me down for two to three days that first time. I got pretty sick. And I remember my son would come downstairs. And he would knock on the door. And he says, “Mom, are you doing cancer today, or can we go play basketball?” And I said, “I don't want to do cancer today. Let's do basketball instead.”
So, to him, it was something very easily that I would either have cancer one day, and I would stay in bed, or I would just go have fun with him. And so, I'd say, “give me 30 minutes. And we're not going to do cancer today.” So, it was just amazing to see his perception.
And I know people have asked me, “Oh—I don't know how you did it with little kids.” And I said, “I don't know how you do without kids. I don't know how you do without family,” because they just, especially that young, he just, you know, they would just—all of them would keep me going. They had something to do. They had a dance. They were growing up. They needed their mom. So, it was pretty interesting.
Nikki focused on her children instead of on her painful skin lesions.
Nikki focused on her children instead of on her painful skin lesions.
That was a little rough towards the end. I think everybody kind of feels that piece, you know, just literally, just blistering, everything kind of coming off. So, it's painful. I would wear my dad's t-shirt. He was a big guy. So, I would walk around the house hunched over so nothing touched my skin, even the cool pads would take the skin off. So, it was just really painful. But again, it was, you know, the kids would come home. And “Hey, can you help me with my homework?” “Yup.” So, we would all kind of sit hunched over and do homework. And just, you know, the skin was going to come off. You were going to have blood. Things were going to hurt. But if I focused on them, like then it would ruin everything else. So, I'd never really kept focusing on it. You know, we just kind of kept going on with life.
For Nikki, radiation treatments felt more isolating than chemotherapy.
For Nikki, radiation treatments felt more isolating than chemotherapy.
It was interesting. I remember my first radiation treatment; I was laying there. You know and they did a fantastic job. They talked to me. I picked out some Norah Jones music, and we were cracking jokes and laughing. And then they explained the whole process. I'm like, “just tell me what's going to happen if whatever.” So, I was ready. And then everybody leaves the room. And I was like, ‘it's really quiet. It's really lonely.’ And I was like, ‘ I like chemo better, because at least like my husband or my dad or my friends were in the room. People would stop by on every treatment. Like we have a good time.’ And I was like, ‘this is super lonely.’ So, then I got to the point I was laughing because I would just keep talking to the people that were doing radiology. And we would just talk. Or I'd be singing. And then they'd be like, “[NAME] you're tapping your foot. Stop. Stop keeping—stop keeping rhythm. You're moving.” And I was like, “sorry.” So that was kind of different. I didn't expect it to be—feel so lonely during the radiation.
Nikki takes supplements to support her liver function.
Nikki takes supplements to support her liver function.
I probably now take more vitamins than I ever did just to have a healthier balance. And I take one that's good for your liver because I know the cancer is there. But vitamin A, C, D, B, bio-omegas, like it's just good for you.
Nikki doesn't let her cancer define her.
Nikki doesn't let her cancer define her.
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.
Nikki finds solace in God and her wicked sense of humor.
Nikki finds solace in God and her wicked sense of humor.
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.
Nikki was shocked to learn that her cancer had returned.
Nikki was shocked to learn that her cancer had returned.
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.”
Nikki finds many different ways to be close with her husband.
Nikki finds many different ways to be close with her husband.
The desire piece of it, didn't have a lot of that.
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Even though I don't have that feeling, love isn't just a feeling. Right? So, it's being very intimate. And with my husband, and we would talk. And we would just, I mean, we, we have forever, we do date nights still all the time. We go on dates. And, I mean, the thing I love is that our kids always see us. Like when we’re on a, when every, if we watch TV, he and I are on the big couch, and we are always cuddling. And when we are in public, we are always holding hands, even at a basketball game. And anywhere we go, he opens my door. Like we're just, we're that tight. And we’re, and like our kids know love is in action, and love is your words. And if I don't, if we're upset with each other, or we don't agree about something, that’s not, it doesn't mean that we're not in love. You know, it’s, it's more than that piece. So, we're still intimate, absolutely. But we now, our foreplay, I guess, is very different. Like we talk about how much we love each other. And we talk about fun memories. And we're very, very silly. I’m very, I should say I'm very silly. So yeah.
Nikki was able to come and go at work as needed.
Nikki was able to come and go at work as needed.
But as far as like my day-to-day, I mean, I'll leave work and go get my shots, and then I'll come back. Or I'd just be, like, "Nope. My hips hurt today. And I'm going to go home because I can't really walk." And I don't have to explain that. I don't have to tell them, like, they just know. Like, I'll be, "I have treatment today." And they're like, "OK. Maybe we'll see you tomorrow." That's just kind of what it is. And I plan my trips around if I have treatment. Sometimes I change my treatment. I just did that. I have a big trip coming up, and I'm like, "Yeah, I don't want to do scans that week because I actually have a big trip. So can we reschedule?" And I mean, it's just not a big deal. We just kind of get it all on the calendar and schedule it, and hasn't really impacted. I mean, I guess it has changed it, but it's—you know, everybody's still flexible and adaptable with it.
Nikki’s children kept her going.
Nikki’s children kept her going.
So, I had my first chemo treatment. And I was probably knocked me down for two to three days that first time. I got pretty sick. And I remember my son would come downstairs. And he would knock on the door. And he says, “Mom, are you doing cancer today, or can we go play basketball?” And I said, “I don't want to do cancer today. Let's do basketball instead.”
So, to him, it was something very easily that I would either have cancer one day, and I would stay in bed, or I would just go have fun with him. And so, I'd say, “give me 30 minutes. And we're not going to do cancer today.” So, it was just amazing to see his perception.
And I know people have asked me, “Oh—I don't know how you did it with little kids.” And I said, “I don't know how you do without kids. I don't know how you do without family,” because they just, especially that young, he just, you know, they would just, all of them would keep me going. They had something to do. They had a dance. They were growing up. They needed their mom. So, it was pretty interesting.
Nikki says cancer hasn’t changed who she is.
Nikki says cancer hasn’t changed who she is.
I don't think it changes who you are. I think it exemplifies who you are. I have a strong faith. I believe God is in control —and that’s—I’ve had to live on that. That's made me so much stronger, cancer doesn't get credit for that. There's no way. The positive things that it brings out, that's not cancer. That's who we are, and I've always been a positive, energetic person. And I think that's just exemplified now.
Nikki has a terminal diagnosis but doesn’t “want the pity.”
Nikki has a terminal diagnosis but doesn’t “want the pity.”
I don’t want the pity. I don't want people to be sad. I want you to be there if I need an ear. But I guess knowing what is going to encourage that person and just doing that. So, for me, it's prayer and living life. Like, ‘what's next? When are we going camping? Can we go fishing? Do you want to go play basketball? Let's go on a girls' weekend.’ Like, ‘what's next,’ not ‘what's right now? What's the bad?’ Let’s—I don't know. I guess that's what I would say is just don't pretend their life has changed because that—that's what I didn't--I don't want my life to change. It's not. I'm not allowing that to change unless I allow it.
Nikki notes that her various clinician teams communicated well with her and with each other.
Nikki notes that her various clinician teams communicated well with her and with each other.
So, the amazing thing is, you have the reconstructive team and the radiology team and the oncology team. And they're all different. But they're all working for you. And so, they were super transparent, which I appreciate. That's what I wanted. I wanted all options, the good, the bad. And then we still were in control. We got to make those choices. And what I liked was that, you know, they would come in and she'd say, “[NAME], we sat down on what to do with you because you're a little bit different, we don't all agree. And I'm going to tell you what our plans were and why some of us liked this one and why some of us like this one and what we didn't agree on.” And so, we would talk through all of it. And that I liked. I liked the super transparency, talking about what was the positive and negative to these two plans, and then, “what do you want to do? What are you comfortable with?” So that—that I really like. They were just really honest and open. And they took control when they needed to. But then they also knew like we ultimately had the decision on what we wanted to do.
For Nikki, the pink ribbon campaign focused attention on the wrong “fight.”
For Nikki, the pink ribbon campaign focused attention on the wrong “fight.”
It's commercialized. And whether that's good or bad, I think, can be based on the perception you're seeing or what you want to take away from it. I think the more awareness, the better. But who's really helping with that is
You know, like I talked before, like insurance.
If we fight against, maybe, the insurance companies to allow more testing at younger ages. Especially with families that are impacted, like that would be a good battle.