Nurse of the Week Stephanie Walker on Living with MBC: “Don’t Put Your Head in the Sand”
Nurse of the Week Stephanie Walker had been a registered nurse for almost 40 years when she was diagnosed with metastatic breast cancer (MBC) in 2015. After working in pediatric intensive care, she had spent the last 15 years as a hospice nurse. Her MBC was asymptomatic, and Stephanie continued to work at the hospice. At the time, she had an average person’s knowledge about MBC: “They said, ‘well, you’re a nurse!’ They assumed I knew, but I knew nothing.”
What did her nursing experience teach her about cancer? “In the pediatric world, I dealt with a lot of pediatric oncology. That’s different, but I used that as my guide when I was confused and didn’t know who to reach out to. I went back to the days when these kids would have to get chemo, and they would get up the next morning—I’m sure they felt like garbage; their hair would be falling out… But you know? They wanted to go to the playroom and play! And that’s where I would go, ‘those kids can do it, and they’re just 4, 5, 6 years old; I’m 57. Why can’t I?’”
Stephanie, now 61, is living in a rural community in North Carolina. Although health issues forced her to leave work in 2018, she has become an active MBC advocate and was recently featured in a video on the Facing MBC Together site. DailyNurse met with her to talk about life with MBC before and during the pandemic.
DN: Has living in a rural area during the pandemic affected your cancer treatment?
SW: “It isn’t bad as far as treatments are concerned. I get my cancer treatment at a community center that’s 25 miles away, and when I talk to the nurse-managers here, they’ve not missed a beat.”
DN: What made you decide to try to locate other MBC patients in your community?
“I’m an easy person to talk to; I’ve never met a stranger. I can easily strike up a conversation with anybody. When I came to North Carolina, I thought, ‘I’m doing well; there’s got to be other MBC patients that… live in NC, who want to get together and do stuff. Not talk about medicine, but you know, have fun.’ I got together an online MBC group and started reaching out through Facebook groups. I had 20-25 people who were members of the group, and we met in the center of the state.”
DN: When did you have to stop working? How did you adjust?
SW: “In February 2018 I was diagnosed with a blood clot on my lung and had a stroke. That was when I lost the job I’d only had for 90 days after we’d moved here [to NC], and I lost my insurance. That was when I started needing mental health support. I wasn’t even close to retiring, and I loved my job—being a hospice nurse. I still keep in touch with some of the families that I met. It wasn’t just a job; it’s a calling from God. I loved what I did; I loved nursing.
I had no income, and I was the primary bread-winner of the family, as my husband’s retired. So, when I started looking for organizations that could help us, I ran across this conference, and they were offering travel grants to get you there. I said to my husband, ‘hey, maybe I can go, and I can learn more about MBC.’ So I went.
That’s when my world really opened up to MBC. I went to my first conference in April 2018, ‘Living Beyond Breast Cancer.’ I walked around that whole conference, I’m sure, like a deer in the headlights. That was my first exposure to a big group of people like me—and a lot of them were African-American women! [Ms. Walker is African American]. I was amazed at the number of people.”
DN: So you’ve since become seriously involved in cancer advocacy and patient education?
SW: “From there on I’ve been advocating and speaking and doing everything I can to get people to take a look out here, eastern North Carolina to the coast area. The more conferences I went to, the hungrier I got to learn more, and I wanted to learn more about research as well. I’ve done a lot of research and medical literacy is a big issue here. Educational levels are very low; it’s heavily farmland. You have people who come in to work the land, and that’s it. There are also a lot of Latinx people who don’t know the language and don’t know a lot about healthcare. And then you have African-Americans, and African-Americans don’t trust the healthcare system for—you know, reasons, and they don’t want to talk about it.”
DN: Cancer is a frightening thing. It’s sort of a cultural taboo, so it’s understandable that some people try to ignore their diagnosis and hope it will just go away.
SW: “It’s one thing to ignore an early stage breast cancer diagnosis, but you can’t ignore a late-stage diagnosis. I mean, I’m at five years. I celebrated myself living with it for five years because being diagnosed with stage 4 breast cancer right out of the gate, even asymptomatic, you’re told [that you have] 36 months. So it’s like, ‘hell no! I’ve got things to do!’ My daughter’s pregnant; I’ve got to see this grandbaby. There are driving forces, but not enough to put my head in the sand.
But just last week I met a lady who has MBC—she goes to the same community clinic that I do, and we’ve met in various online support groups—and she told me that she had progression; the cancer has started to go to her lungs. I said, ‘my goodness. What treatment are you on?’ She said, ‘oh, I don’t know. I show up; they give me my treatment. I sleep while they give it to me, and when it’s over I go about my day.’ And she’s not a young lady. She’s 57 years old. So, to have that kind of attitude… Don’t put your head in the sand; it won’t make you live longer. I’m not saying everyone should embrace it, like I do, but it will kill you quicker if you don’t address it.”
DN: How has the pandemic changed the way you connect with other people with MBC?
SW: “Before Covid came along, there were support meetings. They were for all cancers, but the people who normally show up at those meetings usually are breast cancer patients. This year, I had my heart set on a couple of conferences… The first one was the LBBC (Living Beyond Breast Cancer) Metastatic Breast Cancer conference in April, but Covid came along, and took it away. The conference was virtual. My husband took part in it, too, and he was very pleased with the caregiver aspect. I’ve done a few other virtual conferences. I’ve done ASCO (American Society of Clinical Oncology) and Careers and Cancer—that one is for people who have cancer and are trying to go back to work. There are a few others coming up that deal with MBC, like the MBCRC, the Metastatic Breast Cancer Research Foundation (September 9-11). That one was going to be in Salt Lake City, and of course it got blown away too, so that one’s virtual.
I do a lot virtually, but it’s not the same. You don’t get to see the people you’ve met online, or met at past conferences, and a lot of us don’t go very many places.”
DN: What has daily life been like for you during the pandemic?
SW: “I walk every morning between 6-6.30 (as almost no one is out at that time); I go to doctor appointments. I go to the grocery store occasionally. I wear a mask whenever I go out. But I don’t want all the time I have left to be spent in the house. My husband and I are actually planning a cross-country trip, and that’s going to be a big one for next year. Also, next month a friend of ours has a time-share, and we’re going to spend a week at the beach. We can get takeout and eat in the condo, so we don’t really have to be around other people. I just need to get out.”
DN: How has your health been lately? And has your medical treatment changed during the pandemic?
SW: “As far as cancer is concerned, I’m stable and have been since 2016. I’m still getting my monthly treatments—I’ll be in treatment of course forever—but I’m doing well, considering.
I still go to most of my doctor appointments [in person]. The only telehealth ones that I have are with my psychologist. With Zoom, I can see him, and we can talk, but you miss that… I don’t know. You can see someone’s facial expressions, but you can read a person a little bit better if you’re face to face. I pray that the isolation ends soon; it’s really a drill.”
DN: What would you say to someone who has just been diagnosed with MBC?
SW: “I always want people to know you should take somebody with you to your appointments. Get a notebook and write down your questions beforehand—because when you get there, all bets are off, and you’re not going to remember most of them. Stay off Doctor Google. If you Google everything initially, it will scare you to death. And just have an open, positive attitude.
Ask questions—please ask questions! Don’t take what someone says as the Holy Grail, and don’t let someone steer you into a direction you don’t feel good about. I actually fired one oncologist. Not only do you need to have that open relationship with your oncologist, but their staff is important too. Nine times out of ten, you’re going to talk to the staff before you talk to him or her. If you can’t have a positive, cordial, open relationship with the front staff, you should find somebody else. And you should tell them, ‘I left because your staff sucks.’ You have to find somebody that you’re comfortable with, because you’re going to forge a relationship with that person. They’re going to see you at your best and see you at your worst. You need to find somebody you trust, so you can come out being the best you can.
My first oncologist was the director of the hospice where I worked. He knew how hard I worked, how much I cared, and he knew that quality of life was very important. I asked him, one, ‘have you ever seen anybody with MBC?’—I mean, I didn’t know, and then, ‘are they still living, and how long has that person been living with it?’ And I said, ‘your goal is to make me have the best quality of life for as long as I possibly can.’”
DN: Finally, where should someone with MBC go to find reliable information?
SW: “You need up-to-date, evidence-based material. You can find that at the American Cancer Society, Living Beyond Breast Cancer, and Susan G. Komen. Those are my go-tos. They tell you what questions to ask on your first visit, information on side effects, financial toxicity, mental health—you can find all of that in one area, and they have help lines.”
Stephanie is also an ambassador for Facing MBC Together, a public education and patient support campaign that addresses isolation for people living with metastatic breast cancer (MBC). The Facing MBC Together website includes videos featuring Stephanie and 8 other people of diverse ages and backgrounds as they share insights about the challenges they face, sources of support, and offer words of encouragement for others living with MBC. For more information visit www.FacingMBCTogether.com.
