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Published on December 4, 2020
How Do You Find Balance as a Metastatic Breast Cancer Patient?
What challenges do women who are diagnosed with metastatic breast cancer face in their day-to-day lives? What adjustments do they have to make to balance work, family, and treatment? Listen to a group of metastatic breast cancer patients talk about how they’re coping with issues that are central to their daily lives, from balancing work and finances to scheduling treatment, family obligations, fertility, and raising kids.
MBC patient advocate and 18-year metastatic breast cancer survivor Dikla Benzeevi guides this discussion alongside patient advocates Andrea Hutton, Shonte Drakeford, and Tricia Russo. They are also joined by Krista Nelson, President-Elect of the Association of Community Cancer Centers.
This program is sponsored by Seattle Genetics. This organization has no editorial control. It is produced by Patient Power, and Patient Power is solely responsible for program content.
Transcript | Let’s Talk MBC: Balancing Work and Family and Treatment
Andrea Hutton: Hello everyone. I'm Andrea Hutton from Patient Power, and I was diagnosed with metastatic breast cancer in 2009, and I'm very happy to be here today to be your host for this installment of Let's Talk Metastatic Breast Cancer. Today, we have a phenomenal group of women who are here to talk about their experiences and perspectives.
Leading our discussion today will be patient advocate Dikla Benzeevi, who has been living with MBC for 18 years – incredible. And we have two amazing patients who have become advocates, Shonte Drakeford who's in Washington D.C., she's a nurse and avid snowboarder. And Tricia Russo, a filmmaker from Los Angeles and the founder of Cyan Gray Hope Foundation. We also have with us today, Krista Nelson, an accomplished oncology social worker who has been working with breast cancer patients for over 20 years. So fantastic panel here. So Dikla, welcome and take it away.
Dikla Benzeevi: Hi Andrea, thank you. This is a great time to discuss some of the issues that affect all of us dealing with metastatic breast cancer, and especially in the younger women population. I wanted to start asking you Krista with a question, tell us a little bit about how different women's experiences with metastatic breast cancer are.
Krista Nelson: I think one of the hardest things for women that I work with is that, with a diagnosis of metastatic cancer, you're desperately searching for, what does this mean for me? And I think that's the key, is that it's different for every woman. I have women who unfortunately are so ill they're in bed. And I have women who have never stopped working, who are young, having children, it's the entire gamut that it runs.
And so, I think just really paying attention to each woman's individual needs, what you need as a woman with metastatic cancer, and how we can best support you. I think if you're a practitioner it's really important that they get to know you and know what your goals are. I think having goals is really important and to really acknowledge that we're all in a different place, and that I think the most important message today I want to share is that can change and to constantly be reevaluating what you need from your care team.
How Do You Cope with the Uncertainty of Metastatic Breast Cancer?
Dikla Benzeevi: I know women have many different experiences, whether in their life, with metastatic breast cancer, one common denominator seems to be uncertainty. The uncertainty of dealing with the cancer, side effects, being functional on a day-to-day basis, quality of life, work, housing, all kinds of issues pop up. And how to balance all those issues with work, and family, and life is something that can be a challenge and is a challenge for most of us dealing with it. Shonte, how do you plan and do the things that bring you joy and meaning while living with metastatic breast cancer?
Shonte Drakeford: I've had metastatic breast cancer now for about five years and I was diagnosed at 31, so I'm relatively young, and I had symptoms since I was 26 years old. And I've always been adventurous, I'm an army spouse, I'm a nurse practitioner and there’s a lot of things that give me joy in life. I wanted to make sure I continued to work, although I worked 12 hours shifts on, I had to condense that now to much less and I like to teach. And I think the thing that gives me the most joy is just trying to find the things that I can do now for now, until I can't. It will be a point eventually where I won't be able to do as much, and so I try to take advantage of that.
Dikla Benzeevi: Krista, how do you guide patients to cope with uncertainties of living with metastatic breast cancer? And what decision-making strategies do you advise patients to use to deal with and manage the logistics of life with metastatic breast cancer?
Krista Nelson: Shonte, thanks for sharing what you were sharing. I think that's so important, an awareness that today is all any of us really know. And that uncertainty that's out there, I think many people who have advanced illness talk to me about, acceptance versus denial. And I've had some recent readings of a book by Frank Ostrowski I think is his last name. He wrote the Five Wishes and one of his... or Five Invitations. And one of his invitations is really to welcome everything and push away nothing. So when you start to think about the uncertainty instead of accepting it, but maybe more welcoming it into your life, what shows up? And it's not really assigning that you need to either be accepting that you have advanced cancer, but maybe what is welcoming that, what changes are you making in your life, what's important to you?
I think that the most important thing is to constantly be reevaluating for you in the here and now, or every time you have a progression. Are you spending time, doing things you love and with the energy that you have, what is it that you want to be doing in your life? I work with so many women who feel like, "I have to keep doing this."
How Do You Balance Work, Family, and Treatment?
I do work. I am a worker, I am a mom. I am a lawyer. And at the end of the day, if half of your plate of energy is going to fight your cancer, and you have half of your plate of energy left, how do you want to spend that time? Do you want to spend it with your family? Do you want to spend it doing work? Only you know what the right answer is. And so I think really exploring and being curious about what this uncertainty is bringing to your life is important. And I really believe in the power of connecting with other people, who maybe you don't have to take care of with the uncertainty. So being with groups of other people with advanced cancer is important.
Dikla Benzeevi: Thank you, Krista, for those insights. Trish, was there a time when an everyday task became challenging and how did you deal with it?
Tricia Russo: Absolutely. I mean, I can speak to this in a general sense. Fatigue has been a challenge for me since my diagnosis and a specific example of an everyday task, is keeping up with my son. He's now four years old, but when he was nine months old, I had just had a laser ablation to my brain, and then they had to wean me off steroids. And I remember I was having a lot of trouble weaning off those steroids to the point that, when he was learning how to crawl, and I was on the floor with him, not sure if I could get up, I was so exhausted. And that's a very extreme example of fatigue.
Like Krista said, her patients, they're all different types of patients and what they're doing in their lives, or capable of doing in their lives because of the disease. But that also - each woman or man changes how much energy they have over the course of time as well. So there are times where I don't experience the fatigue at all. And then there are times where it just hits me over the head, and how I've had to deal with that - in that specific example, my son was nine months old as I just had to call for help. I had to call my father and say, "I need help. I need to find more time to nap. I need to sleep a little bit later. This is time you can have with your grandson." And it was a win-win situation all around. But on the daily, the thing that's helped me the most is looking at energy as a bank account and just being as mindful of it as I would be with money.
Krista spoke a little bit to this, but the biggest thing is sitting down every day and looking at the next day and saying, how am I going to spend my time that day? And it's best if it fits into the larger context of what's going on for the year, what's going on for the quarter, the month, the week, etcetera, etcetera. But for me, in keeping up with my four-year-old, it's knowing okay, especially since he's not in preschool because of the pandemic, it's knowing between 9:00 and 10:00 AM, he has to get his energy out. That is going to help me conserve my energy the rest of the day, just that one hour, knowing… give him a soccer ball and give them a goal and get him going. So looking at time and energy more mindfully has helped with fatigue.
Andrea Hutton: I think it's so important for, people living with advanced cancer, and under treatment to have, as Krista said, and you alluded to, having that support network that are people that you don't have to put your energy out for. So not being afraid to ask for help, which we know is so hard and yet so important. I described the fatigue that comes with cancer treatment as it's like you have a bathtub full of energy, and then every once in a while, they just pull the plug, and it drains out in two seconds. And it's not the same - people who are not taking treatments like this, they don't really understand that word fatigue in the same way, because it's like wearing a lead suit. I mean there's nothing you can do, you can't pick yourself up. So, having a support network and being aware of the ebbs and flows of your own energy bank is so important. I totally agree.
Dikla Benzeevi: Thank you for that, it's a really good point and one you remember, as we budget our time and where we place our energy and time as well.
Dikla Benzeevi: Shonte, I was wondering if you could tell us about how your work life changed through your cancer journey?
Shonte Drakeford: Oh, hell. Yes. That thing changed a lot. Okay. So as I mentioned before, I was a registered nurse and I was a labor delivery nurse. And that requires a lot of moving around, up on your feet for 12 hours. I worked the night shift and I immediately had to stop working. And I had a huge tumor on my hip, as well as I had tumors in my lungs, and a lot of spots in my spine, in my rib. And so physically I can't do that job. I was put on crutches immediately for about five months, I had to get radiation and my orthopedic oncologist was like, "You can't go into work." And I was like, "That's all I know is nursing. What else I'm going to do?" So my husband made a key component to me, he was saying that, "You have to reinvent yourself." And I was like, "What do you mean?" He was like, "You have to recreate yourself into doing the things that you like to do and nursing is it, so how are you going to do that?"
I was in the middle of nurse practitioner school and I wasn't sure if I was going to continue it. I decided to continue that. I was like, "Well, I'm just going to keep achieving my goals until I just can't." Like I mentioned before, I do what I can until I can't. And I was able to accomplish that goal, get my nurse practitioner, get board certified, now work as a primary care provider, but I can't work full time because my energy just won't allow it.
You just have to readjust and COVID just made me readjust more. But working is a joy for me. I even volunteer. I was a foster child, so before COVID I was volunteering as a camp nurse with foster children, and kids who are impacted with HIV and AIDS. And it was very passionate to me. So you just try to find something that's passionate to you. If you can't work that’s okay, my husband is really good support. He's in the U.S. Army, he's also cybersecurity engineer. So that helps with funding, but I also had to apply for disability, and I didn't want to accept that, but I learned how to.
Dikla Benzeevi: Thank you for that. It's good to know that there can be multiple passions in life and that whatever job that’s going on, doesn't have to necessarily be the job to continue at. I'm happy to see you found other directions of joy to experience. Krista, is that a common experience among metastatic breast cancer patients?
Krista Nelson: I just want to say if you aren't pivoting as amazing as Shonte did and does, that's okay too. I think not everyone knows their passion in that same way and struggle a little bit personally with figuring out what works for them. The thing I do appreciate about this diagnosis is women have an opportunity most of the time to be on many, many treatments. And so, there is this chance to reevaluate as time goes, what's meaningful.
Many women see switching to disability as a failure. They often say that's like giving up. And, a lot of times I sit with women and say, "Now what would you say to your best friend or someone that you cherish that was saying that same thing?" And you'd say, "Well, this is a benefit you've paid into your whole life. You're choosing to spend time doing something else." But oftentimes it's our own in inner critic and lack of self-compassion that we struggle with. So I think, I see women be successful in lots of different ways, and I love it when I get to work with someone who's passionate and finds it quickly. So it's great to see, inspiring.
Tricia Russo: I'm a little bit more of the struggle example potentially that Krista's mentioning. When I was diagnosed early stage, I was working at Walt Disney Motion Pictures. My hours were very, very long. It was pretty much if you are awake, you are working. So even after I had drinks or networking three nights a week and had to read scripts when I got home from work pretty much until I fell asleep, and then would wake up in the morning and do it all over again. And even when I was diagnosed, again this was Stage 2B when my cancer treatment center is literally right across the street from my office. So, I used to walk across the street, get treatment, and then walk back. And just try to maintain as much normalcy as possible.
And I even got promoted during my one year of mastectomy, chemo, and radiation. And pretty much right after that promotion, my mastectomy got infected. And I was put back into the chemo room to receive an antibiotic infusion. And I had total PTSD. The second they hooked me up to that IV, I was like, "Oh my God, I have to change my life. I have to stop working at this pace. I can't do this anymore." And I wish I took a step back, to be honest. And I'm just saying this so that other women can think about this as well, but I wish I took a step back and accepted the disability thing more, either took a leave of absence, and then went on disability, or just given myself the time to process it. But I literally just walked in and quit. And then I basically had a year, since that was not a very thoughtful decision, a year where I was trying to pick up the pieces again and figure out what was next.
Like I said, that was when I was an earlier stage. So actually two months after I left my job is when they discovered that it had metastasized to my brain. So then I was really focused on treatment there and I wasn't going back to work at that phase. I was going to deal with the brain mets first and then go from there. But a year after my brain mets is when I had the ah-ha moment to pick up a camera, to film my journey, to start my family and have my son. And if I hadn't left my job, if I hadn't experienced all those things I experienced in that year, I don't think I ever would have picked up the camera and gone on that journey to film, Love Always, Mom. And then to go around on the film festival circuit and meet so many people who are struggling to build families or to spread awareness for metastatic breast cancer, et cetera, et cetera.
So, point being, I definitely stumbled into what I was doing next, but the second that I figured it out and had that moment, it was synergy. All the experience that I had in the past, combined with my present experience to step into my future. And now my present. So, I'm very thankful for all those experiences, but if anyone's going through that right now, I feel you so hard. It was such a challenging time because my career really was my identity. And I basically had to re-identify myself.
Dikla Benzeevi: I think it's something that all of us dealing with metastatic breast cancer can relate to. I had definitely a similar experience when I was working. I worked through all my initial treatments and everything until I had a spine fracture and that cut it short because of the pain, the disability, and everything involved. And then the ups and downs during the years. Krista, what are your thoughts on this? And it's a bit of a two-part question, your thoughts on Shonte's and Tricia’s stories, but also some advice on how people with metastatic breast cancer can prepare to communicate with their employers or co-workers about their diagnosis, or about the current situation they're in.
How Do You Navigate Initially Sharing Your Diagnosis at Work?
Krista Nelson: Thank you so much for both sharing your stories. They're both so important. I think Tricia, when you said, "I just quit." I was like... Because I think when working in oncology social work for a long time, my number one piece of advice for women is to know your benefits and know your resources that are out there. Because many women I've worked with actually ended up making maybe even a little more money on disability or retirement based on where they are in their company. And being able to still then maybe find their passion with volunteering or doing a different sort of work. So number one, either find a resource like a social worker or use the website Triage Cancer, which is amazing, has all the laws. Sometimes maybe you, aren't going to go on full-on disability, but you'll ask for reasonable accommodation.
So, I think number one, getting educated and getting all the information for yourself too, and know what is available to you as benefits. And then I think as you think about extending that information out to your community, number one, being mindful. I always tell women the second you tell anyone, you've let go of that information. So you can't really expect your bestie at work or your direct supervisor... Just know that, you're letting go of controlling who has that information, but you are protected and it's okay.
I think it's good to go through your employer, through the chain that you should, whether it's HR or using a disability company, so that you are protected as you do the decision making. So as you tell your employer, I encourage you to just be honest. They want you to be successful as well. If you don't have a great relationship with your boss, use your HR representative to also be there with you and your oncology social worker can help you navigate all of that free of charge, usually from your cancer center.
Does Breast Cancer Affect Fertility and Family Planning?
Dikla Benzeevi: Before deciding about leaving work completely, like you said, Triage Cancer and there's also cancerandcareers.org, they tell you what your rights are and what your benefits may be before you make any big decisions. Thank you for that Krista. We're going to move on to a very, very delicate subject, especially for younger people dealing with metastatic breast cancer, which is fertility and family planning. Shonte, is there anything you'd like to share from your own experiences or your thoughts on this?
Shonte Drakeford: As I mentioned earlier, I was already dealing with infertility issues five years prior to my diagnosis and I'm triple positive. And I think a little bit slightly contributed to why it metastasized so quickly. Even though I tried to get imaging early and everything, add the IUI, IVF. And I was a foster child. So, that's always been in my husband and I plan. We met in high school and we planned things out. And when it came to, it was difficult and ended up being that I had endometriosis, that was a factor. So by a year prior to me getting diagnosed, I did IVF and I wasn't able to freeze any embryos at all. And that devastated me, but I accepted it. So I was moving forward to adoption when I got diagnosed and I literally was about to put the deposit in.
I already did all my orientation and my training and things, even with the state department for foster care. And they literally told me, "No, you can't do it." And I accepted it. And then I reached out to my social worker and she gave me some oncology friendly adoption agencies. And they told me, "No, because I can't, unless I'm in five years of remission." And we all know with metastatic breast cancer, you won't be in remission. But had I had the knowledge now, I probably could have advocated more and pushed for a stability note or something to prove, because my husband is absolutely healthy, and this can happen to anyone even a biologically born.
So, I wish I had known. I've already accepted it. I have six godchildren that I love that have been able to fill that void. But I know it's very challenging because my husband and I are very young still, and still can't have children.
Dikla Benzeevi: Thank you, Shonte. I know it's a deeply emotional place to come from. This is a huge issue a lot of us deal with. Tricia, is there something you'd like to share from your experiences? I know with your foundation and your documentary it really touches home.
Tricia Russo: Yeah, absolutely. I mean I can relate to everything everyone's said so far. I mean, Krista with finding a team who supports your goals, it's really about quality of life I think. We talked about goals earlier as well, whatever they are, whether or not you want to continue a career or you want to become a parent, they're all important. And one of the things we've tried to do with the film as I've sat on panels now for the past year with a lot of different cancer centers, so that the oncologists in of themselves can be exposed to the story as well, and maybe it'll change their perception and their thinking, the next time they hear a patient who's metastatic say, "I really care about having a family." Instead of kiboshing it right away. That they think, "Oh, I know somebody who did that." And at least have the resource, if not just the awareness that they should continue this dialogue and not just shut it down.
So that's something that we're doing with the foundation. We were able to build our family with an egg donor and a surrogate which obviously is a very expensive process. So that obviously is also a hindrance for people when they're going through. Just like Shonte, we knew adoption with a metastatic diagnosis would be extremely challenging if we were able to do it at all. For us we had egg donor surrogate. You can actually see it all in the film. If you're curious about what that process looks like, the film is available on Amazon prime.
What Is the Cyan Gray Hope Foundation?
And then you can always reach out to me through the Cyan Gray Hope Foundation if you have any additional questions. And we are additionally offering our first grant to intended parents this year, it's a breast cancer thriver, and her husband who also need a surrogate. They did do fertility preservation. So, they do have embryos in the bank but the costs to have a surrogate are so high. And because of the film, we have a fertility clinic, who's waving their fees. We have an agency that's waving their fees. And then we have a grant that we've cobbled together to help offset the costs. Still an expensive process, but we pretty much have gotten it down to 50% of the rate for them.
So, we're hoping this is something that we're going to be able to offer every year if we can keep it going. So again, this is my new work and this is what feeds my soul and hopefully, it all works out because the world of infertility is very similar to metastatic disease, you take a gamble and you don't know whether or not it's going to be successful. So hopefully it is. And hopefully, we can create another family in this coming year. But this is a very, very, very challenging issue.
And what helped me when I was fighting to have my family at the same time as living with metastatic disease was just realizing that you're carrying the weight of both of these diagnoses and that they are... When a fertility specialist said to me, "An infertility diagnosis can psychologically be as impactful as a cancer diagnosis." It almost let me breathe again. Like somebody heard me and knew what I was feeling and acknowledged that I was experiencing both challenges. And I think that's really important for young women who want a family and are also living with metastatic disease to hear.
Dikla Benzeevi: Thank you for sharing that, Trish. I think it's really important that everyone is aware of what's all the options available to them out there. So they're able to choose and not think that they're limited or not make that assumption. It's a huge, huge issue. Something that should be discussed right at diagnosis with the oncology treatment plan. We're moving forward into finding support and this one is for Krista. How does one communicate with their partner, family, and friends about their metastatic breast cancer diagnosis?
What is the Importance of a Support Network?
Krista Nelson: I think just those shortest simplest answer is as the person with cancer, do not assume that other people know what you need. So, automatically you need to tell people what you need, how you want them to show up for you in your life, what you don't need. A lot of times that's easier. What I don't need is to hear about everyone in your life that died from cancer. What I do need is for you to offer to pick up my kid or hang out with me during chemo. So, I think just really being able to articulate, communicate is the key. I mean, it's like a relationship with a partner. You need to let the person in your life know what you need, what's helpful and recognize that things that come back to you that don't feel helpful, recognize, have some grace to recognize that they're grieving. They're worried and they probably don't know what to say. And just even giving them permission to say, "I bet you don't even know what to say right now." That's really a gift you can give to your people.
Dikla Benzeevi: Trish where have you found support either in networks you had before diagnosis, and any new networks of support that you found after diagnosis?
Tricia Russo: My family has been a huge support to me. They set up a calendar when I was going through chemo treatment. And they traded off sitting with me through those treatments. So that was... I didn't know to ask for that. They presented it to me and I just was like, "Great plan." But it is something that I would ask for, or recommend somebody ask for because it does change the game, you don't want to go to those appointments alone if you don't need to. I think I have my old friends, the ones that are true friends, they stick around after the diagnosis. They are there for you, whether or not you're asking for something or just checking in to see if you need anything.
Like I said, with shaping my new identity, I was afraid of losing that old network and the real friends they're still there. So just be cognizant of that, that you don't need to fight to retain all your friends. The ones that are true will still be alongside you. And then the cancer community has been a huge resource and I've developed so many new friendships within that community. And I have to be honest when I was trying to put my head down and continue working and maintain a normal life. I was not very open to support groups and I came to it a little bit later in the game. But when I did, I was like why did I not just do this in the beginning? This is awesome. People know what you're going through. There's shorthand of dialogue that we're there to lean on each other and nobody else understands really what you're going through except for another patient. So I would just say, wish I got there faster, but I'm there now.
Andrea Hutton: I want to thank you guys so much for sharing all of your stories and insights. Dikla you've done such a wonderful job. I'm wondering what your thoughts are, as a wrap up of what you've heard today, living with MBC for 18 years, you have been through so many of these things that we've covered today.
Dikla Benzeevi: I relate to a lot to what everyone says, and obviously everyone's experience is unique. But I think that one of the biggest factors in let's say my thriver-ship, or all of us getting through it emotionally, mentally, hopefully with treatment being around a long time is that it takes a village. And it's not a journey to go through alone if we can even call it a journey. So, it's very important to reach out for support in what that looks like for every person and what they need. Ask questions, speak up about your concerns and needs, and recruit people around you to help you out so that you can make it through. As they say, it's not a sprint, hopefully it's a very, very long marathon.
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