“Uncertainty, stress, and worry was at a peak, with everyone concerned about how COVID-19 would affect their work and families and home lives. Directives were changing, seemingly hourly,” recalls Fritze. “It was clear that we needed a place for our staff to feel safe, grounded, and centered in the middle of this crisis.”
The Center’s Foundation team came together with the Posner Wellness & Support Center team to brainstorm how they could create a restorative space to make employees feel better. Fritze says that within three days, the Zen Den was born.
“We transformed a community health classroom—not in use because of pandemic safety restrictions—to a sanctuary,” says Fritze. “With the financial support of our wonderful Foundation and community donors, we rented room dividers and green plants, purchased mp3 players, wireless headphones, and Himalayan salt lamps. We also included a CD player, essential oil diffusers, antigravity lounge chairs, and a massage table, borrowed from our Posner Wellness & Support Center.”
Fritze describes the room: “It was partitioned into four separate private spaces with lovely wooden screen dividers. Three stations—or individual relaxation nooks—were set up, each with its own relaxation chair, salt lamp, mp3 player, and headphones. The music players were preloaded with six differently themed 15-minute guided visualizations, narrated by male or female voices, per the guest’s choice. Between uses, for the health and safety of our staff members, all of the equipment was thoroughly sanitized.”
The last section of the room was a designated Healing Therapy space. On a massage table, health care workers at the Center could get a 15-minute personal Healing Touch session. “This is a powerful yet subtle bio-field therapy to support the body/mind/spirit in achieving a relaxed state of being. To enhance the experience, we combined aromatherapy with the Healing Touch sessions,” explains Fritze. “All employees were able to schedule these free sessions in advance using a dedicated online program accessible to all staff via the intranet, website, and mobile phone.”
The Zen Den, says Fritze, “was purposefully designed to be a respite, an oasis, in the eye of the storm. The overarching service we provided was TLC, an opportunity for caregivers to be cared for in a deep and meaningful way. We provided the opportunity, the time and the space for team members to take a break from the physical, emotional, and mental chaos, and go within to a place of peace and safety.”
When some of the safety restrictions were lifted and patients were returning to the hospital, the Zen Den had to be moved. Fritze and others are currently searching for a more permanent space option so that the Zen Den can be reopened again.
Other staff members were inspired by the Zen Den to create their own wellness spaces. “Several units within the hospital have created their own Zen Den meditation and quiet spaces—great options for busy team members who can’t leave the units during their shifts, due to PPE and safety requirements,” explains Fritze. “These units are using relaxation chairs with salt lamps and essential oil diffusers. The great thing about this is that it shows that these staff members, these care teams, are making their holistic health a priority. Each space has its own personality. Some have beautifully decorated scarves adorning the walls. Some have little fountains. Some have seashell displays on the table. Each unit is owning their health and well-being in their own way, so we can continue to be here for our patients, our colleagues and our community.”
Fritze believes that all people need to take time for self-care—to quiet the mind and to stay centered and healthy. “I am very happy to see my colleagues taking an interest in self-care and mindfulness practice. It is so very important to take the time to quiet the mind from the constant stress we are exposed to on a daily basis. Health care workers will always put their patients’ needs first, even, at times, to their own detriment,” she says. “I believe we can and should take a few moments to care for ourselves so that we can take the very best care of our patients. We all think and process information better when we are centered. It’s gratifying to be an active part of a work culture that actively encourages that we lovingly care for one another, particularly now, when health care workers need it the most.”
Most nurses understand the importance of discussing end of life care and preparing advance directives, but they are only human—and it is very human to avoid confronting the prospect of one’s own death. The pandemic should serve as a wake-up call, though, especially for nurses, who are even more vulnerable to the virus than other healthcare workers. With the number of lives lost to COVID-19 passing 200,000 in the US and 1 million worldwide, if you have not already discussed end of life care with your friends and family, it’s time to act.
Nurses know from first-hand experience that most patients who run the code blue gauntlet never sat down with their loved ones to discuss the decisions and consequences that come with end of life care. There is a natural reluctance on both sides. Most people shy away from thoughts about their own death, and it is painful even to imagine losing someone you love. It can be so distressing and awkward to discuss end of life care, that a spouse or parent who tries to broach the subject is often shut down without a hearing.
People tend to agree that they should make preparations for their end of life care, but there is a substantial gap between beliefs and deeds. In a 2017 Kaiser Family Foundation poll, 87% of the respondents—young adults as well as senior citizens—said they considered it “very important” to have a document of their wishes for end of life treatment. However, only 34% had actually documented their wishes for medical care if they became seriously ill, and just 18% had discussed end of life issues with their doctor. Ironically, 95% of the respondents to a 2018 survey by The Conversation Project said that they were willing or wanted to talk about their end-of-life wishes. It can be that difficult to take action on a matter one believes to be “very important.”
What can you do to help? If you make plans for your own end of life care, you will be in a better position to persuade patients to make and document their own arrangements. Perhaps you already make a point of discussing these issues with patients, but haven’t prepared your own plans? The pandemic is giving many nurses a new sense of urgency. A 27-year-old ICU nurse, Deborah Szeto, shared her experience on The Conversation Project blog, admitting, “as someone who frequently talks to her patients about having honest conversations with their loved ones about their end-of-life preferences, the COVID-19 pandemic was the final push I needed to truly practice what I preach.” She found herself “reading article after article about seemingly healthy young adults being hospitalized for COVID-19 symptoms. Some of the most chilling stories were about young ICU nurses. I imagined myself on high flow oxygen—or worse, intubated…” Instead of hiding from her fears or denying them, she proceeded to fill out an advance directive and emailed a copy to her healthcare provider.
You can read ICU nurse Deborah Szeto’s blog on COVID-19 and end of life planning here. Our Care Wishes offers a series of guides and helps users to create a free custom document recording their medical care decisions. To find an advance directive designed for your state, visit the Prepare Advance Directive page on the Prepare for Your Care site and select your state from the drop-down menu. For information on how to select or be a health care proxy, see this guide from The Conversation Project.
The pandemic is forcing college students to make grave decisions that would have been inconceivable a year ago, and many are operating with minimal guidance.
Although people in their late teens and early twenties with COVID are less likely to contract severe cases and are often asymptomatic, college students around the country are testing positive after suffering from headache, chills, fever, and nausea. And, as they spread the virus amongst themselves, it is all too easy for them to transmit it to people in older, more vulnerable age groups such as campus employees and community residents. As the nation’s colleges and universities set widely varying policies and march to different drummers, students may feel like they are on their own. They’re struggling with their sense of personal responsibility, competing forms of peer pressure, and undoubtedly a sense of thwarted expectations. Sources of realistic advice are scarce, and school administrators are unwilling or unable to provide guidance for managing the “edgier” aspects of campus life.
Student-led COVID safety advice programs such as Oberlin College’s “ObieReal” are still getting off the ground, where they exist at all, but they have a sound philosophy. As Oberlin Vice President and Dean of Students Meredith Raimondo said, “Telling people only what not to do is not a strategy for long-term behavior change; you have to give people options.” With this in mind, we would like to offer some real-world college social-life tips for the 2020 “COVID-Ed:”
1. ALWAYS Wear Your Mask in Public Spaces
Surgical masks are still considered critical supplies, so you should have at least three cloth masks that you can launder after a day’s use. Find a mask that is as comfortable as possible and stays in place, so you are not tempted to remove it or touch it. Wear your mask whenever you go out: human nature being what it is, you can never assume that other people are going to practice social distancing, let alone maintain it consistently!
2. Protect Your Pod/Bubble
Your campus pod or “bubble” can help preserve your sanity, but if the virus enters your group, you could all get sick. Remind one another to always wear masks and social distance in public spaces, practice good hygiene at all times, and follow the Pod ground rules.
3. Don’t Go to Frat/Sorority Parties
Don’t even think about hitting a Frat or Sorority party. Greek life has served as an incubator for numerous college COVID outbreaks; in fact, the New York Times has identified at least 250 cases of COVID-19 originating in sororities and fraternity houses. Some universities have asked houses to shut down, but they often lack the power to enforce closings. As much as the Greek experience may enrich your life, by attending a gathering at a frat or sorority house you can catch and help spread an illness that has killed an average of 940 people each day in the US since January.
4. Be Smart About Where You Eat
The “freshman 14” used to refer to the weight you can put on during your first semester. In 2020, “freshman 14” may become a reference to the days you spent quarantined in a dorm-from-Hell because you got exposed to COVID. Some colleges have carry-out dining halls, while others continue to offer indoor seating. If your school is among the latter group, they almost certainly have “grab and go” dining options, which are far safer. Instead of dining out at a restaurant, order takeout meals, get deliveries, or use curbside pickup. Visiting a restaurant’s outdoor seating area increases the risk of exposure, but it is safer than eating inside. If you must take the risk of eating in an enclosed space, only do so in an establishment that maintains a six-foot distance between tables (staff should of course be masked).
5. Stay Out of Bars. Please!
Alcohol is always a temptation in college, but drinking during a pandemic—even in a bar that attempts to comply with six-foot distancing—is only a bit safer than playing Russian Roulette (but in a pandemic, you may hit not only yourself but anyone within reach, ranging from friends and family to complete strangers). Bars have been the locus of a number of serious outbreaks. As the night progresses, people talk more loudly (which spreads larger droplets faster and further) and are easily tempted to disregard even moderate social distancing. Infectious disease expert Dr. Sandra Kesh told C-Net that the disinhibiting effects of alcohol should rule out bar visits: “Bars are noisy, so you’re yelling your drink order at the bartender and other people are right by you—it’s really a perfect environment for that shared air space which we get so worried about.”
If you or your friends are reckless enough to give way to social pressure and go out drinking in a bar or a social gathering, there’s no call for being completely irresponsible: wear a mask, and insist on going to a place that serves in an open-air setting and adheres to social distancing. Set a conservative limit on the number of drinks you will have (definitely do not get drunk)! Keep your mask on when not drinking, and if people start shouting, and the management or hosts cannot stop guests from leaning in toward one another, leave immediately. In short, this is the time to embrace the joys of sobriety.
6. Learn to Enjoy the Great Outdoors
While the weather still permits, take your social gatherings outside. Meeting a group of friends to eat, walk, or exercise on campus grounds makes it easier to maintain social distancing, and at daytime gatherings, the ultraviolet light further reduces the danger of transmission and supports your body’s resistance by increasing your vitamin D intake.
7. Reach Out and Tele-Touch Someone
COVID does not have to crush your college social life. FaceTime, Zoom, Google Hangouts… you already know ways to get creative with technology. Meeting up with a study group on Zoom can help you hit the books together with fewer distractions. Video apps are great for meeting with friends, and they create a nice safe space for a budding romance: when you’re flirting with someone remotely, they can only ogle what you’re willing to display (and vice versa); you can get to know each other well enough to really be sure whether you’re ready for physical contact; and if things go sour, it’s easy to make a clean break. One Zoom dater’s favorite strategy for a date that’s heading south is, “Oh my gosh, my Wi-Fi went off!”
Many people, including nurses, have daily mantras or affirmations they use to set their intentions and motivate themselves throughout the day. Mantras can help you get through a tough time, but the ones you’ve always used before might not be enough to get you through the pandemic. If you’re looking for new mantras or affirmations, or you want to get started with them, here are 10 phrases tailored to COVID-19:
1.I will care for my patients to the best of my ability.
Nursing is also about patient care, so leading with a patient-centered affirmation is very fitting. Notice that the words focus on what’s possible—“care for my patients to the best of my ability”—instead of focusing on unrealistic expectations (i.e., “I will cure all my patients”). All mantras and affirmations should be equally realistic and within your abilities; otherwise, they will put unneeded pressure on you and stress you out.
2. This will not break me.
Caring for patients during the pandemic, especially patients who are severely sick with COVID-19, can be absolutely overwhelming. Tell yourself that you may bend under the pressure, but you are strong enough not to break. You will get through this in one piece, and you will live to fight another day (or rather, live to help your patients fight another day).
3. I have survived hard times before.
This relates to the previous mantra, and the two work well in tandem. As proof that this experience will not break you, consider all the times you thought you couldn’t overcome a challenge—and then did it anyway. Look to the past for evidence of how strong you are and how your resiliency will enable you to persevere in the midst of these incredibly tough times. Even when the last thing you wanted to do was put on your cotton scrubs and go to work, you still did it, and you can do it again.
4.Stay in the present.
With no real end to the pandemic in sight, it’s easy to get caught in a spiral, wondering about all the disasters the future might hold. This is an understandable impulse, but try not to give in to it. Instead, focus on the present moment and helping the patients right in front of you (or making the most of your day off, when you’re not on shift). Concentrate on what you can do this week, this day, this hour, this minute.
5.I can make a difference.
Within the scheme of the pandemic, it may not seem like the actions of a single nurse can make a difference either way. However, your actions matter to your patients, which in turn impacts their loved ones and their entire network. Maybe you can’t make a difference to the whole world, but you can (and will) make a difference to your patients. Your work is not futile.
6.This is temporary, and it will pass.
As the pandemic drags on, the hypothetical end point seems further and further away. Some days it feels like there has always been a pandemic, and will always be a pandemic. But even the worst situations eventually come to an end. Even though it may feel endless, COVID-19 will end and vaccines will become available. We don’t know how far away the light at the end of the tunnel is, but there is a light.
7. I cannot control everything.
This can be a tough one for nurses, who often joined the profession partly because they like to be in charge and have a lot of autonomy. But many things are still out of your control, and this is especially true in the healthcare field where you can do your best and still not achieve the patient outcomes you so desperately wanted. Rather than blame yourself, remind yourself that you cannot control everything and sometimes things happen.
8. I will focus on things that I can change.
Another mantra duo, “I will focus on things that I can change” is a good follow-up to “I cannot control everything.” Thinking about how you can’t control everything can sometimes lead to feelings of helplessness and powerlessness. But just because not everything is in your control doesn’t mean that nothing is. Concentrate on what you can do, even if it’s just taking the time to listen closely to a patient.
9.I have things to be grateful for.
In hard situations like coronavirus, it’s very easy to fixate on the negatives because there are so many bad things happening at once. While it can be difficult, try to find some small things to be grateful for–even if it’s as simple as a call with your loved ones or a nice soothing cup of tea. It sounds silly, but looking for the small things will help you find tiny sparks of positivity.
10. I am allowed to have negative feelings…but they won’t overwhelm me.
You are probably having a lot of emotions right now, many of them negative. You might be scared, sad, angry, confused or all of the above at once. Tell yourself that it’s okay not to be okay and that you are allowed to feel all your feelings, however negative they may be. Avoid “toxic positivity” which insists on projecting happiness and productivity at all times. However, you should also remind yourself that these feelings will pass. You don’t want to wallow in them so much that you tip into despair.
The right mantras and affirmations can help you center yourself, clear your head and reaffirm your priorities. If you’re in need of some mantras during the pandemic, try reciting these 10 phrases to yourself before donning your scrubs and heading to work. Thank you for all that you do!
Nurses spend countless hours on their feet. And it can cause them to hurt—a lot. So we consulted with a professional to find out how you can treat your feet right and avoid pain whenever possible. Dr. Grace Torres-Hodges, DPM, is a board-certified podiatrist in private practice in Pensacola, Florida, as well as a member and spokesperson for the American Podiatric Medical Association (APMA).
She took time to answer questions about how nurses can treat their feet.
What can nurses do to treat their feet well while they are actually on them? Walk/stand a certain way? Rest them if possible?
Nurses should consider themselves as athletes and that their job—especially on the hospital floor—is like playing a sport. It can be a true workout, especially as miles can accumulate walking the floors, and there is regular demand on the joints with bending, squatting, reaching, and lifting. The amount of pressure that puts on the feet is taxing.
So first off, eating healthy is important; stay hydrated, and avoid salty foods that can cause swelling. Wear compression socks and/or compression sleeves to reduce the degree of swelling of the skin in the legs. Meditate and stretch daily before and after a shift, as it is so important to take care of yourself before taking care of others. Wear wicking socks to draw the moisture away from the skin as with all that activity, feet will sweat.
What should nurses look for in a shoe/sneaker to wear while working? Should they have more than one pair to rotate them out?
Wearing comfortable shoes is key! Again, like an athlete, it’s part of their gear/equipment. Make sure that when buying shoes:
Try on shoes at the end of the day, as that is when the foot is the largest.
Make sure that the shoe bends where the toes bend (don’t just go by size)—try on both shoes.
Make sure that there is a sturdy heel counter (squeeze the back of the shoe, and it should be firm. If it is a clog/mule, it should have a sturdy strap so that the heel doesn’t shift from side to side).
Make sure that the sole of the shoe is made of a material that is non-slip and water-resistant.
Look for a cushioned shoe to accommodate shock (recommend using sneakers as it has a cushioned inner sole, a shock absorbing midsole, and a protective, tractioned rubber outer sole.
And don’t forget to rotate your shoes. With that much mileage on your feet, you treat them like your tires.
What nurses can do to soothe or treat their feet after a long day?
Soaking at the end of the day is therapeutic—not only for hygiene, but to soothe the musculature. Many times, contrast baths can be quite effective, as going from warm to cold and warm again allow for the musculature to contract and expand. Massage is effective as well whether it is manual or with some device like a ball or roller. Also, it is important to protect the skin, as it is the body’s natural deterrent from infection. Avoid skin that is too dry or too wet. Inspect your feet regularly. Dry well between your toes and use a daily moisturizer.
What would readers be surprised to know about treating their feet right?
Pay attention to your nails; they can indicate a health history. The color, texture, and growth rate of the nails can be an indicator of disease, diet, infection, or injury.
Be cautious at nail salons, and don’t let your guard down. You are doing your best at work to take care of your feet, and you would not want a moment of relaxation to result in pain, ingrown toenails, and/or infection. There are some great pedicure pointers from the APMA.
Is there anything else that is important for our readers to know?
Nurses need to remember to take care of their feet! Nurses are such a vital part of any health care team. For all the compassion and care that they provide to those they tend to, nurses often put their needs above others. They need to remember to take care of themselves—and especially their feet—to help keep them going.
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.