Supporting a Loved One Through a Cancer Diagnosis

Caregiving can be a deeply meaningful experience—but it can also be incredibly challenging.

In this heartfelt episode of What to Know Down Below™, host Jannina Norpoth—a uterine and ovarian cancer survivor and GRAMMY-nominated violinist and composer—sits down with her mother, Barbara Barefield, a fellow uterine cancer survivor, and Bridget Gabbe, a clinical social worker at Memorial Sloan Kettering.

Jannina and Barbara reflect on the unique experience of having cared for each other through their diagnoses, opening up about the emotional weight of shifting roles and the resilience it takes to support a loved one. Bridget offers expert insight into the realities of caregiving, along with practical advice for finding resources and maintaining self-care. 

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Transcript

Welcome And Purpose

SPEAKER_01 0:05

Welcome to What to Know Down Below by Tina's Wish. We're here to empower you with the knowledge and tools you need to advocate for your own gynecologic health. Knowledge is power, and we encourage everyone to join us in learning more about what you need to know down below.

Guests And Lived Expertise

SPEAKER_04 0:28

Well, hello everyone, and welcome to What to Know Down Below by Tina's Wish. My name is Janina Norpoth, and I am a uterine and ovarian cancer survivor, as well as a tri-Grammy nominated violinist and composer. I'm so thrilled to host today's episode on a topic that is incredibly personal to me. Today we are talking about caregiving, how family members can best support a loved one through a cancer diagnosis. We'll be sharing personal experiences and offering advice to those who might be facing a similar situation, with the hope that you leave this conversation feeling informed, supported, and most importantly, less alone. I'm honored to be joined by two very special guests: my mom, Barbara Bearfield, who is also a uterine cancer survivor, as well as the amazing Bridget Gabe, a licensed clinical social worker from Memorial Sloan Kettering, who works closely with gyneological cancer patients and their families. On a personal note, she also was my therapist at Memorial Sloan Kettering and played a vital role in supporting me through my own diagnosis and treatment. Before we dive in, can you introduce yourselves for our listeners? So, uh Bridget, we'll start with you.

SPEAKER_02 1:47

Sure. Thank you so much, Janina. Um, as Janina said, hi, I'm Bridget Gabe. I'm a clinical social worker at Memorial Sloan Kettering Cancer Center. Uh specifically, I'm the outpatient gynecological social worker, and I support uh patients and our families on both our medical, oncology, and surgical sides. I am also on our caregiver committee and I co-facilitate a caregiver support group once a month. Beautiful.

SPEAKER_03 2:14

And mom, would you like to share a little bit about yourself? Sure. I'm Barbara Weinberg-Bearfield. I live in Detroit, Michigan. Although I grew up, my youth was in New York. Um I'm an artist, a graphic designer, a photographer, an event organizer, a community organizer. And I was diagnosed with uterine cancer 23 years ago when the world was a very, very, very different place. We would not have a podcast like this, or the ability to have a Zoom meeting with people in different parts of the country like this.

What Caregiving Really Involves

SPEAKER_04 2:48

Absolutely. And it's something that we will address a little bit more further along in this podcast, um, what those those resources are, how the world has changed, and um, but also like how far we we still have to go in education and getting the word out and supporting each other and creating um resources for patients and survivors. So um our focus today is caregiving. So uh I'm gonna start with Bridget and ask if you can um explain what caregiving typically involves, especially uh when supporting somebody through a cancer diagnosis.

SPEAKER_02 3:27

Absolutely. Um, caregiving can be a deeply meaningful experience, but it can also be incredibly challenging. Um, you know, caregivers are often balancing supporting the person that they're caring for while still supporting uh the rest of the family. And maybe that means there's little kids or there's aging parents. Um, they're typically still working a job and managing the finances and trying to navigate really just the immense emotional and physical toll of supporting somebody with a cancer diagnosis. Um, you know, it involves being there for the person, not just emotionally, but uh typically includes logistical and practical uh matters like taking the patient, you know, to appointments, helping to keep track of side effects and medications, assisting with personal care. Um, you know, it can often end up feeling like a second job just because of the way that our healthcare system is, uh, it really does rely on caregivers to fill in the gaps in medical care.

Barbara’s History And Delayed Diagnosis

SPEAKER_04 4:36

Absolutely. And um, delving in a little bit more to care giving, um, I my mom and I have both supported each other through cancer diagnosis. So we've both been on either side of these roles of caregiving and um the being the person who is being taken care of. Um and I think a lot of us as female cancer patients as well, we end up in our survivorship, in our um, you know, and going through treatment, being our own caregivers. Even when we have caregivers, I think women often end up being their own caregivers. I know I did so much of my own advocacy and note-taking and um, you know, dealing with insurance companies while being sick as well. And so I I want to get into that a little bit later, but first I want to just dial it back a bit and ask you, mom, if you can give us a little bit of your own cancer history, what it was like going through your diagnosis, and also you had a parent with cancer as well. So can you connect that a little bit to your own cancer journey with your dad and your survivorship?

Advocacy, Genetics, And Lynch Syndrome

SPEAKER_03 5:47

My dad was diagnosed with colon cancer when he was 46 years old. So that's a very young age, and it was devastating. I was only 14. Um, everybody said, Oh, don't worry, he's gonna have the surgery, he'll be fine. However, by the time he had the surgery, it was too late. At that period of time, back in the 1960s, um, there were no colonoscopies, there was no diagnostic tools like we have today, or the kind of knowledge and treatment that we have today. So by the time he had symptoms, severe symptoms, it was already spread and too late for him. So that was my my experience with cancer is people would not talk about it. It was stigmatized, it was secretive, um, it was devastating, it was definitely a death sentence almost all of the time back in when I was a teenager. So when I found out I had cancer, I also, although times were a little bit different, I also felt like it could be a death sentence. And it was very frightening and very isolating. And I didn't have access to the kind of information that we have now, and we can just, you know, Google in some keywords, we can uh go on Facebook and say, you know, hey, who else has had uterine cancer? And hey, I'm spotting, and I'm already in menopause. I've been in menopause for X number of years. Why, you know, I shouldn't be spotting, and my doctors aren't finding anything, and who should I go to? So it's a very different world. So um I knew there was something wrong because I was spotting, and doctors were saying, Oh, you're going through menopause, but I had already gone through menopause three, four, five years prior to when I started spotting at age 51. And also one of the big mistakes I made is after I had children, I stopped going to an OBGYN and was just going to my general practitioner who's a woman. I felt comfortable with her. She did the pap smear. That was it. That's what I, you know, what I thought. So I went to doctors, I had an ultrasound, I they tried to do some biopsies and non-successful. And finally, I was sent to an OBGYN. And sure enough, even she said, Well, you probably have fibroids, you know, it's menopause. And I kept saying, I think it's cancer. You know, uh, I just had this feeling, even though I didn't fit the profile of somebody who was a high-risk rate for cancer, I wasn't overweight with uterine cancer, you have a less chance of getting the cancer if you breastfeed, if you have a child. Um, so there were all these different characteristics I didn't fit into the high-risk mode, except that there was so much cancer in my family, and I didn't connect the dots. So, by the way, if you have this family history, which is really important to keep track of, you need to know what your grandparents had, you need to know what your parents have, you need to share that information. It's so, so vital in helping for you to be aware of what you, you know, what kinds of things you should be doing, your lifestyle and your medical treatment to advocate for yourself. So I found out I had uterine cancer and had uh ended up with a full hysterectomy and radiation. So that was my experience. It was isolating. Um, I know we're supposed to be talking about caregiving, so I should go to the good part of this experience is that Janina came in, she was in college in New York, and she came in to help care for me. Everybody else in my family, my husband and son, were kind of traumatized. And Janina came in with this determination and this uh calmness and peacefulness that was so, so important in bringing down the anxiety and the stress and this fear and all of that stuff, having somebody by your side who can um, you know, just keep things breathe, you know, help you breathe through it, help you feel positive and hopeful and in, you know, know that you're gonna get better and things are gonna turn out okay. It's so important to have someone like that. And for me, my daughter was that person.

Partner Vs Parent Caregiving Dynamics

SPEAKER_04 9:57

It's interesting that you say that because, you know, uh as much as I think we were all traumatized by your diagnosis, it was very shocking. And do you, you know, you were not at an early stage. You were, I think, three, three B or three C. Is that correct? Yeah. Um wasn't stage one, that's for sure. Yeah, no, you you had it had spread to your lymph nodes, and um, you know, and so that was it was it was shocking. It was very scary for all of us. And I will share that, you know, and I'm so happy now to hear that I was such a calming presence in your life that you needed at that time. Um, because I've blocked it out. I don't actually remember. Um, I obviously remember leaving school and I remember coming home and I remember trying to, you know, fill in whatever role was needed at that time to the best of my abilities at at 19 years old. And um, but I I myself, it was so traumatic that I actually I don't remember. I I remember um getting in a big fight with my dad because I had used the wash machine, which was really old and flooded the basement. Like those are the things that stand out for me. Um, you know, all the things that I did wrong, of course, not not the things that I did right. So, you know, so that that means a lot to me now that I was able to help you get through that, especially having been through this now myself, and and talk about uh access and seeing the signs, even with all the knowledge that I had, even with knowing about the Lynch syndrome and knowing about my history and going to many doctors and you know, trying to be proactive about getting on top of it, somehow I I still did not get diagnosed early. Uh I I was also stage 3C and actually more advanced because I had a secondary ovarian cancer on top of the uterine cancer, which was 3C. Um and I I found myself in this place, like, how did we get here? You know, how did how did how did how did I how did I mess this up? And that that is why, you know, even though now we have so many more resources, we do have the internet, we have these social media spaces where, you know, I don't think everybody's necessarily wanting or comfortable just posting on Facebook, you know, I'm having these symptoms in my nether regions. Um, but there are, you know, more more important there are many, um, for those who are listening, there are many like private uh Facebook groups um where you can go and ask those questions and you can ask those questions anonymously, or you can ask those questions, you know, sharing your information, but they're private groups just for focus groups just for that, um, which uh were very helpful to me. Um Share Cancer Um is I I just want to share for everybody listening, is an incredible organization, and their support group was something that was vitally important in pulling me out of this isolation that I was in. You know, I I went through um two months of IVF before I had a full radical hysterectomy, and then followed by six um chemotherapy treatments, and and having that group of women who had been through it, who were cheering me on, who were checking up on me after my surgery, who were giving me advice about how to deal with chemotherapy, or just being like, you know, I've been through this, you're doing great, you know, what you're experiencing is normal, sharing pictures of you know, all of our bald pictures together. And this was something, mom, I I think you you never had in and I think, you know, for me, I can't imagine surviving the last year of my life without that. So uh so so resources are are vitally important, but also doctors, finding the right doctor for me, finding the right doctor, and that's where MSK came in too. Um I had a tremendous amount of um knowledgeable, um fabulous practitioners there, like Bridget, um, who who helped me a lot. It was actually a a childhood friend um from middle school who had gone through breast cancer, who I reached out to when I was first when they first found a mass in my uterus that actually is same. I went through um, and even the MRI said it was unlikely to be cancer. But at that point I had started a pillar period that had not stopped in six weeks, and actually it never stopped until I got my hysterectomy. And even still doctors were like, oh, this might be a fibroid, we don't know what it is, we don't know, you know, and and it the minute I went to the oncologist, Dr. Sunoda at MSK, he said, we're in trouble, we're doing a biopsy immediately. They were able to tell because the tumor was shedding, um, which which fibroids don't do. Other doctors had suggested like being put under, maybe waiting until I could be put under to do the biopsy. Um, you know, in that case, if I had waited two months, it would have been a disaster. It would have been really bad for me. Um, so it was crucial. I got a diagnosis. You know, once I started that period, I knew something was really wrong. I got a diagnosis within two weeks, which is pretty incredible. Um, Mom, how long did it take actually for you to get your diagnosis? It took several years, yeah?

SPEAKER_03 15:21

No, it was within a year.

SPEAKER_04 15:23

But it was with but still a year, that's a long time.

SPEAKER_03 15:26

At the fact that I was not seeing, I think women should continue seeing OBGYNs, specialists, after they have their kids, stay with the specialists. It's so important because they are going to be more aware of what's going on and keep track of things. So that was my mistake. I I did not, I was relying on family practitioners because they were women, I felt more comfortable with them. Although I did finally go to an OBGYN who was a woman, and she still didn't think it was cancer until the diagnosis came back. You know, so I think people are more doctors and and everyone is is a little bit more aware, but we still have so much more work to do to do. And then of course Lynch syndrome, which at that time was called HNPCC, hereditary um non-polyposis colorectal cancer. They just thought that that gene was uh gave you a high risk rate for cancer, but then they realized, well, it's also uterine cancer, it's prostate cancer, it's a whole range of cancers. So now it's called Lynch syndrome. And if you have a parent who has had a number of different cancers, especially colon cancer or uterine cancer, it's it's just a blood test to find out if you have that um, you carry that gene. So you can be more aware. You can, if you're a woman, you can have endometrial biopsies from time to time and and know that you um can keep if there's any symptoms or signs, or even before that, you can be on top of it. With with um colon cancer, you can have colonoscopies starting at an early much earlier age than what they recommend for um people who don't have this syndrome. It's a 50, they say it's a 50% chance that you will pass it on to your kids, but both of my children have it. Um my brother and I were the only siblings uh from my parents, and we both have it. So it just because one sibling has it, that doesn't mean the other sibling might also have that 50% be in that 50% practice.

Chemotherapy, Neuropathy, And Practical Support

SPEAKER_04 17:24

And my my brother also has it. So both of them um and I'm gonna spin it back to caregiving in a second, I promise. But I I think that um, you know, this is a really important conversation for people to to clue into. Um obviously, genetic testing is such an amazing tool to know our history, to know our risk. And um, and again, I'm set up so beautifully at Memorial Sloan Kettering for specific testing. This includes um my scans at this point, which are every three months, but also yearly colonoscopies, yearly skin exams, even within Lynch syndrome, depending on uh on your genet specific genetic makeup, um, you're at risk for possibly different types of cancer, um, which can be stomach and brain and small intestine. So knowing exactly your specific risks gives you the ability to, you know, do those preventative testing. And I found even even my current general practitioner, I have to educate her about this stuff. Um so it's not it's still not common knowledge and it really needs to be. And again, that's you know, doing your own research is is is so important and being able to come to your doctor and ask those questions, ask, you know, ask them for those tests if you're not in a facility or seek out a facility that can really knowledgeably guide you towards your your preventative care. So um I'm gonna swing it back to you, Bridget, and ask you um, have you seen differences and how people care for a parent versus a partner versus a child? And what are those dynamics like emotionally?

SPEAKER_02 19:04

Yes, for sure. There's definitely different uh different dynamics that can come up, you know, based on kind of what the setup is and who's kind of caring for who. I think, you know, you had touched on being a 19-year-old having but to leave college and care for your mom. And of course, you know, your mom when you had cancer is maybe in a different place, maybe there's more flexibility, things like that. But when it comes to, you know, I think a child caring for the parent, it is a definite role reversal. Um, and that can feel very strange and isolating, kind of speaking of, uh, and bring up a lot of complicated feelings, of course, like grief and sadness, but there can also be feelings of resentment or or feelings of uh obligation. Um and, you know, I think when it comes to caring for a partner, a loved one, a spouse, um, that can have its its own kind of challenges because the lines between caregiver, professional caregiver, and romantic partnership can, you know, completely blur and blend, which can definitely strain intimacy, romance can can kind of go on pause, you know, can communication can sometimes falter. Um, and just it's it's very difficult, of course, to see a spouse uh going through that. Um, and you know, when a parent is caring for a child, while that might be more kind of the quote unquote like natural role, um that can of course bring up feelings of of deep protection um and of course grief around a child possibly missing or you know not not making certain milestones. So I think there's there's definitely similarities, you know, the traces that go through all of it, um, but certainly there are some nuances um to each kind of uh caregiving relationship.

SPEAKER_04 21:03

Do you see a difference between men and women when it comes to caregiving?

Radiation, Side Effects, And Work

SPEAKER_02 21:11

Yes. Um, you know, of course I am mainly working with women um as I'm I'm you know working with gynecological cancers. So uh I think Janina, you touched on it towards the beginning of our conversation that you did a lot of the caregiving for yourself. Um and it's not to say that, you know, you you don't have a wonderful person in your life, but I think generally a lot of times women are kind of the ones that are used to like steering the ship and getting things done and keeping things organized. And so when they're then dealing with a diagnosis, that doesn't just go away. Um, you think that that remains, but it it can be challenged very much so because there are going to be times where some of that independence, that autonomy is is gonna be shaken and you need to lean on somebody else. And you know, I think Jeanine, in your case, you have your your husband. Um, but men, I think generally can sometimes again, generally, um don't always ask for help. I think women can be seekers, but also very, very much um kind of taking charge and doing doing things on their own and advocating for themselves.

SPEAKER_00 22:32

Mm-hmm.

Early Menopause And Fertility Loss

SPEAKER_04 22:33

Yeah, I I will um I'll share that in in my own cancer journey, um, and my husband actually became quite a wonderful caretaker. Um, but out of out of necessity, um, you know, I generally I don't think men are comfortable in that role. They've never, you know, a lot of men have not had to be in that role. They're used to somebody else fulfilling that. Um, and I think it can be really scary and challenging for them. And then for the women who need that support, if your spouse or partner is going through crisis, that's that can also be very difficult to be called on to support them as you need the support. Um so I, you know, I my mom actually did come in many times then and really supported me. Um, you know, just just coming in and cleaning the house when I was too weak to to do it, and helping me get organized and cooking and doing these kind of things that are such a comfort. Um, you know, I think when you, you know, just like when you're sick and your space is cluttered and disorganized, and you know, it's just a constant reminder of all the things that you can't stay on top of, um, which can be very demoralizing. And um, in the midst of actually my chemo treatments, my dad got very, very ill. And my mom had to go and support and be home with my dad. And so my husband was forced to really step it up. Um, and he did, and he he was at every single chemo treatment. Um, I'm a violinist. I went through terrible, terrible neuropathy. Um, I actually nearly completely lost feeling in my hands and feet during treatment. We actually stopped one of the drugs halfway through um because it was so bad. Um, and I mean, even just like holding a water bottle, I was dropping things all the time. I at the worst, when I put my when I put my instrument up, I couldn't even feel the strings underneath my fingers. Um, so that that's I mean, that's a whole nother challenging th thing that I've had to work through. Um, you know, but but my my husband was was a hundred percent there for me, you know, um, whether he, you know, was always able to fully emotionally support me or um keep up with things. I I still did a lot for myself, but um, you know, he was definitely he was there, he was there for all my doctor's appointments, he was asking questions, you know. At the worst, where when the chemo was really bad, I had like bad chemo brain, couldn't remember he was taking notes as I told him to, so we could track my symptoms, um, because I I'd just completely forget. So I I think that's actually another huge part of of caregiving, especially as you're you're caregiving for someone with chemo, there's just so many, so many challenges that chemo forces your your body to go through physical, mental, and uh, and it's that's really hard for for everybody. Um so I, you know, mom, I you went through, even though we had very similar diagnosis, you've also been cancer-free for what, 23 years now, 22, 23 years now. That's that's um something to absolutely celebrate. Um, but you went through radiation. Can you share a little bit about what that was like and um you know, and what your recovery was like going through that?

SPEAKER_03 26:14

Sure. Um before I do that, I I just want to say that some of the most important elements of caregiving is listening, you know, to to try to really listen to the needs of the person. And sometimes they won't know, they may not know what they they want or they need. So it's you've got to be listening to really small body language or whatever. Um, and certainly compassion and empathy are really important elements um to to at the top of the list of trying to be a caregiver and and then forgiveness because the person who's ill, you know, when you're ill, you're stressed out, you don't feel well, you you could lash out at somebody, you know, you say might say stuff that you wouldn't ordinarily so you have to as a caregiver, you have to be very patient and let things go by, and then you know, try to do the best you can to um fill in wherever you can, whether it's the person asks for a glass of water or some tea or something, don't wait, do it immediately, you know, bring them what they need immediately because that could make the difference in in their comfort for the whole rest of the day. So um, that's one of the things I wanted to mention. And Janina asks about my my cancer and my treatment. So um remember, this is 23 years ago. So I remember going through several months of radiation. I would go and I would drive myself. So um after I healed, and also I, you know, I went, I worked at home. I'm a graphic artist and photographer. So I was doing, I tried to get back to my regular routine and sitting at my computer and doing the work. I had, you know, all kinds of backup and people that were taking over my work at the time. And I and within a few days, I was like back in there trying to get back to my normal routine. So, and I think you know, Janita, of course, was trying to also, but the the the chemo uh put that on hold for a while.

Resources, Support Groups, And Asking For Help

SPEAKER_04 28:12

So my mom is is on she just cannot stop. And I love her, and I and I have inherited this, but I was gonna say she she um you know, and uh if she is not like this, I will be concerned. You know, I I'm always trying to get her to slow down. But you know, I do. I remember you literally coming home from the hospital and going straight to work. Right. Bring me bring me my going straight to I I can't, you know, I can't, I can't imagine. And I, you know, and it but at the same time, I think, you know, both of us are our work gives us so much pride and motivation and purpose. And, you know, that's been the hardest thing for me about all of this, actually, is my physical inability to do my work. And I've actually had to, you know, really taking a step back and accepting what I I couldn't do and allowing myself the grace to not do it and to be okay with that. That that's that could be a whole nother podcast in itself. But anyway, yeah, I want to bring it back to you, you going immediately back to work after your hysterectomy and working through radiation as well.

SPEAKER_03 29:25

Right. And and and then just I just wanted to get healthy again. I wanted to be back on my feet, you know, walking and driving. And so by the time radiation started, I think I think maybe there was four weeks, maybe four to six weeks for the hysterectomy to heal enough, and then they start you with radiation, and then it was three times a week. And I um I you get tattoos where they're gonna where they aim the the radiation. There were three on my pelvic area, and I had a mantra. Like a prayer that I would say over and over again while it was happening to try to calm myself and try to think positive energy through my body. Because you know, you're being bombarded with toxicity. So you've got to try to stay positive and uplifted and, you know, really hopeful that this is you're doing the right thing. Because some people decide not to do the radiation or not to do the chemo. So it's a big step. That's it. The doctors say, you know, we're sure you're gonna have a, you know, we're almost positive you you will have a better chance of survival if you do X, Y, and Z. So you lean toward that um because you you want to be able to live and enjoy your your life and your family. So, but um then you have to deal with the side effects and the weakening with radiation. For me, I had years where I had no, I felt like I didn't have temperature control in my body. So I was always shivering, always freezing. If I really got cold, it took a really long time for my body to warm up. Um, I would physically shake. But, you know, I got over it. And, you know, Janina now is she spends hours and hours a day working to strengthen her body and uh counter the effects of the chemo, and because she's determined she wants to get her life back and have control over her, you know, be a healthy person and be able to do everything that she wants to do. So, you know, I guess the message here is yes, it can be very debilitating in many different kinds of ways. Um, the treatments are not easy, they are not just difficult while you're going through the treatments, but they have after effects that can go on for months, if not years. And but you need to be determined, hopeful, know that you can um you can work through many of them and still have a positive and happy life. Absolutely.

Self‑Care For Patients And Caregivers

SPEAKER_04 31:59

Um I realized I got sidetracked in the middle of my thought, which is I was saying how during my husband was supporting me during treatment, I had this terrible neuropathy. And you know, so every treatment we'd come with a full suitcase with three sets of ice gloves and socks, and we'd switch them out every 20 minutes. So it was keeping my hands and feet as cold as possible to advert the neuropathy, you know, and he'd be he'd be the one doing that for me. Um and uh I think for him watching me go through this, and also like I'm I'm a huge support system for him, you know, and so that role reversal was was very difficult, um, I I I would say, and um and going back to my own um when you were being treated, mom, and you know, I I I do have this um I still have this ability to find, and I think this actually comes from performing. I think going through these high periods of stress, being on stage, there's so much pressure on you, and oh, there's all these people watching you, um, and finding that focus and calm within this with within a lot of pressure, I think has also I've been able to translate that into situations in my life where um I don't know what's gonna happen. I'm super angry, sad, stressed out about it, but know that I I need to collect myself, you know, and be strong for somebody else. So um I think that that is what snapped in when I came to to take care of you. Um but inside I I was, you know, I was very emotionally unsettled, you know, and I did not feel, you know, that I had really anybody that was that I could that would support me. You know, I I my friends, they are they certainly felt bad, but they didn't know how to support me. I didn't really have anybody that I could open up to and talk to honestly about it. Um I think you know, dad and and my my younger brother were going through the same same thing, but we we didn't necessarily have the communication and and and resources that I actively sought out through through my cancer um when I had cancer. Um and I think that's again speaking to the time period and and just not necessarily knowing that the resources were available or how to find them or or whatnot. But um I certainly my husband joined a support group. I saw so much impact when he was going to in in his ability to be patient with me and relate to what I was going through. Um, that support group helped him a lot. So I um want to ask you, Bridget, what are what are some resources for family members and and what can family members and caregivers do um to both help themselves and their partner through diagnosis and treatment and recovery?

Gratitude, Resilience, And Closing

SPEAKER_02 35:20

Yeah, absolutely. I mean, you're touching on support groups, and um I might be biased because I am on the caregiver committee and I facilitate a caregiver support group, but uh they really, to what more to your point, can be such powerful places of connection. Um, it's really joining a room of people who are speaking the same language and specifically to caregiving, they understand like the nuances of caregiving and um what goes into that. And I've really seen people rally around folks in these groups and really provide that support. And and it's it's an outlet for the caregiver instead of maybe the caregiver kind of putting everything on uh the patient, whether that's a spouse, a child, a parent. I think uh a caregiver having their own space where they can talk about um the uh uniqueness of being a caregiver, the isolation of it, um, the the grief, um also, you know, those those highs and those lows that can come. Um, I think that it can be just a really uh wonderful place to get that support. And and they're not for everybody. And that's kind of what I always caution people, you know, support groups, being in a room with a lot of people and talking about your feelings is not for everybody. Um, so that's why I definitely encourage the social workers at at MSK. We also uh provide counseling to caregivers. So I always encourage um caregivers to learn uh what is your hospital offering in terms of support? You know, do they have their own program for caregivers? If they don't, what community resources are there? Is there a hospital social worker that you can meet with? If not, um, you know, there's there's organizations like Cancer Care that provides, you know, free counseling to patients and also family members. Um, so those are some of the more like really kind of practical things, the support groups, seeking one-on-one counseling. Um, and then I really just encourage people, you know, when they when you find something that works for you, maybe that is um going out for a walk by yourself, going out for dinner with your friends, lean into that. Um it's it's important to also maintain um your sense of self when you're going through this, because so much can be, of course, consumed by what's going on with the person with the diagnosis. But the caregivers, you know, generally like right alongside um, you know, for the lack of a better word, ride or experience. And then also, sorry to continue. I think uh Barbara, you know, to your point, to your point, it's um the listening is is really so important. Um listening and hearing and maintaining that open line of communication. I think sometimes caregivers can sometimes be fearful about voicing other feeling, but it's so important because you don't want any sort of resentment or whatever is being unspoken to brew and create, you know, tension when they're when it's already such uh a tough time to be in.

SPEAKER_03 38:44

Yeah. Patience is such an important part of caregiving because when someone is ill, their anxiety and stress level and ability to sometimes even be kind or nice goes out the window, and you have to just it's okay. You have to be the person that's no matter what, you're gonna be try to be kind and forgiving and not let things not let things pass because they will. Um I wanted to ask about or bring something up, and maybe it's a whole other podcast. And that is with the cancers of the reproductive system for women, often we have full heatherectomies, and that can bring on early menopause. And the effects of menopause are are intense and we're not necessarily prepared for it. Um and so that that's a whole other conversation, but I just wanted to bring that up that that is something that's really important that we both as women and caregivers and um family need to be more outspoken about, you know, talk about it, share experiences, prepare women for it's a tr it's a natural transition in our lives. We all go through it. But when you have your your um reproductive system taken out suddenly, when you your hormones were at this level and they're always on there at this level, is really, really hard. Now, for me personally, I had already gone through menopause in a really gradual way, so it wasn't quite as devastating, but for younger women, it can be really difficult.

SPEAKER_04 40:23

Well, I can I can certainly speak to that having had um I am 42. Um, you know, so I was approaching menopause, I was in perimenopause, um, but certainly having a full uh radical histone degree um has put me in surgically induced um menopause, which is is you know, it's not an easy thing to go through at at 42. And certainly I think the the hardest part about it was dealing with overnight losing um the ability to have children. Um, you know, I think that was for me one of the hardest parts about this diagnosis. And even though, you know, most people aren't maybe not having their first child in their early 40s, I think um for many women uh they are, you know, um, especially career-driven women. And and in my case, I'd had so many people telling me, oh, you have so much time, you have so much time, there's so many advances in, you know, medical practice that will, you know, make it easy or more safe for you to do this later in life. Um and for me with the Lynch syndrome, that was actually terrible advice. Um, and and Lynch syndrome, um, even though I I didn't know, but I suspected that I had Lynch syndrome, uh given my my family history. Um so so that was you know something I was somewhat prepared for to hear, but also not prepared to hear, and dealing with that was was very traumatic. Um I have to say, because I had had cancer for quite some time, I don't know how long, but stage 3C, we can at least say that it was a couple of years. Um, you know, my hormones were very out of whack even. And so I I will say I think I feel more balanced now post-treatment um than I than I did for a long time leading up to treatment. Um, but you know, just psychologically going through menopause at 42, and I'm sure, you know, there's many women with this disease who've unfortunately had to go this through this even younger. Um, you know, it makes me feel older. My friends are not going through menopause yet. Um, dealing with those like pressures of of being and embracing being an older woman. Um, you know, I haven't eased into being an older woman. I haven't eased into menopause. I haven't eased into this, you know, I was just like pushed, pushed into it. And that I think can be really very, very jarring. Um although I have to say I love not getting my period. That part of it is is especially after getting a six-month period and all the trauma of the cancer. That that part's that part's great. So I want to ask some final questions here. Let's see. Uh Bridget, are there resources that you recommend for caregivers? We've talked about some of them, support groups, books, and other tools, but but anything that we haven't talked about, resources that you recommend?

SPEAKER_02 43:32

Yeah, I mean, I think that one of one of the things that I I really encourage caregivers do is to ask for help. Um, and I think that that can sometimes feel uncomfortable, especially because they're used to providing the help. Um, but I think that asking for that support is one of one of the best things that a caregiver can do. And that that can show up in that can look like many, many different things. That that could be, you know, asking someone to run a quick errand for you. Maybe that's organizing a meal delivery service so you don't have to cook after a long day of maybe helping with appointments or and working your own job. Um, you know, maybe it's help with you have a lawyer friend, help with paperwork, or, you know, it's even just calling a friend to chat, even if it's just for five or 10 minutes. I think that it can feel, of course, all-consuming, but I think that reaching out um to the community, you know, whether that is to other friends and family or whether that's to professional helpers like social workers in the hospitals or community organizations that are doing some really, really wonderful supportive work. I think, you know, putting that padding on, padding yourself um, you know, a little bit so that you also have the tools. You're not just helping the person going through it, but you're also receiving support um in ways that feel helpful.

SPEAKER_04 44:57

Absolutely. Um, and I think the last question I'm gonna ask both of you um is I I'd like to talk a little bit about how self-care for both the patient and the caregiver, how important that is. And um, I I think my own self-care and journey with self-care has been so hugely important in getting myself through this diagnosis and treatment and recovery, seeking out the resources, but but also being able to communicate what my needs are to the people that are are taking care of me and to myself, even asking myself, what do you need to feel good? What do you need to get through this day? What do you need to get through the next three months? Being able to articulate that is so hugely important and gives the people around you the opportunity to support you. So you said something really important, you know, not just about your immediate caregivers, um, you know, your family, your doctor, um, but also your um community. And for me, my community really stepped up and was hugely important part of helping me recover and and motivating me because finding the motivation when you are going through this and it is really testing every part of your mental and physical stability, you need every resource you can possibly get. And and being very open about my cancer journey and what I was going through on social media was actually a hugely healing step because um it not only just feeling like I was I'm a a performer, so my life is very public. And so even just by not by withholding information and people were noticing I was not on social media, I was not performing, and they were wondering, where are you, you know, and and having to go out and and lie to people as to make make some excuse as to what why I wasn't participating or active in my life, um, felt it just didn't feel good. And so being able to be very honest about what was happening to me um was not only healing, but it allowed for my community to step up and support me. So, you know, that that looked like just m hundreds of messages of support. It looked like people sending me, um, sending me gifts or just checking in on me, you know, that that made all the difference when when my friends would just call me and be like, How are you doing? or or set up a time to come to my house and just hang out and watch TV with me because that's all I had the energy to do. Those things made a huge difference. And then as far as you know, as my career being a freelance artist, this is absolutely terrifying to go through a diagnosis like this. You know, you're only as good in these circles, you're only as good as the last thing you did. And so taking a step away indefinitely is scary. And so all the people in in every place who said, We're here for you, we're ready for you, as soon as you are ready to come back, we're making space and holding space for you. That kept me motivated. That that kept me saying, Okay, let me make the decisions right now that are best for me. Let me not focus on this and let me just work hard to take the next steps to get better and and try, you know, just just try to see when it felt impossible, like I couldn't, there was never gonna be a way that I was gonna get back to my life. And I'm happy to say I'm not 100% there that, but I'm taking back my life. And I've had incredible amounts of support from from my community, um, from my, you know, like Bridget and MSK and um organizations like Music Cares and uh Foundation for Musicians Treatment um have have stepped up to make sure that I get the care that I need and the financial support. And my family has, you know, uh tirelessly and my mom tirelessly financially supported me. Um so it really does take a village. So um, so I that's this is my my my final question to both you, Bridget and and Barbara. What does self-care look like for you? What does self-care look like um for the people around you or for your your patients? Um, I think for yourself recognizing the self-care and and and also encouraging my husband to prioritize his self-care. That made a diff big difference when I was like, you need to take the afternoon off. You need to go for a run, and you need to, you know, just just relax and take a minute to collect yourself. Because by doing that and by giving him space to take care of himself, he could come back and be a better support system for me. So um so mom, maybe you want to start, talk about what self-care looks like for you.

SPEAKER_03 50:17

Well, I have to say that I struggle between feeling that self-care is self-indulgent and selfish. Um, when the people around me are having more, seem to be having or are having way more serious problems, health problems, uh, physical, mental health problems than I am. I feel like I need to be this pillar of strength and uh not take time for myself. But you need to, because if you don't take good care of yourself, you're not gonna be a good caregiver. You'll be filled with anxiety or resentment or um just not finding that place of calmness and balance that you need to be in order to be a good caregiver. So if it's taking a yoga class regularly, going for a walk, like Janina says, you know, making that phone call to making sure you have space that you continue keeping your friends, you know, relating to your friends and doing things that are important to you, you have to find that balance and um and and know that you will only be a better caregiver if you're also caregiving for yourself, you know, and and making sure you're in a good space physically and mentally. So, but I I I need to know I struggle. I struggle with that um all the time.

SPEAKER_04 51:41

I think I think a lot of people do, and I think there's a you know, huge, especially as women, there's a lot of guilt involved in in terms of, you know, I should be doing this or I should be doing that. And so, you know, I mean, part of my whole journey coming back to health and reclaiming my life is also dealing with that voice that says, you don't deserve this, you don't deserve this time, you you haven't earned this to take care of you, you're relying on other people and their generosity to do to be able to do this. So, you know, silencing those voices and saying, no, actually, all the more reason because I I have all these resources, do I I need to ask myself truly, what do I need? And I I ask myself every day too. It my self-care looks different every day, even though I have a routine. I'm asking myself, okay, what do I need today? What what foods do I need today? What focus do I need today? What what how does, you know, how will my my exercise and my breathing and what I watch on TV or what I read or who I reach out to today, what people in my life will support, my ability to feel good and take care of myself and get through the things that I I want to take on today. Um, and that looks different every day. Um so I I want to ask you, Bridget, the same question about self-care, but also maybe you have some um advice for women who are going through that same thing, who are feeling guilty about taking the time and the space and the resources they that they need and deserve to truly take care of themselves.

SPEAKER_02 53:17

Yeah, absolutely. I mean, I think that, you know, self-care is one of those words or terms that's kind of become a buzz term. And we're like, what does this actually mean? And I think, Janina, what you're saying that is really touching on it very well. Um self-care looks different every single day, you know. Um, when I think about it for me in terms of my work, um, you know, doing this, this really important work that I love, but that is, you know, challenging. Um, you know, I try to make sure that when I, when I'm leaving work, that I'm going home. And for me, it's cooking, right? It's it's finding, I think, what what is your outlet? Um, you know, what feels good for you. And it's not like I'm making anything elaborate, but for some reason, just ending the day, going home, being in the kitchen, shopping vegetables, it puts me, it anchors me, right, back in kind of like my everyday daily life and puts me in my body in a different way. So I think it's it's really it, you know, I wish there was kind of one piece of advice I have, but it's not, of course, as we know, it's not just, it's not just bubble baths. It's really figuring out what does self-care look for me. And a lot of the times for women specifically, it is it's giving ourselves permission to have a rest, have a break, but also knowing that you deserve that. And really acknowledging that. And I actually think that some of these things can take practice. It's kind of maybe decades of undoing certain messaging um, you know, that that we have um around our roles in society. Um, so I think it's maybe that kind of constant conversation with yourself when you're feeling like wait, I should be doing more. It's I am doing so much that I actually deserve this, you know, time to myself or whatever it is that that looks like. So I think that it's it's taking the time to practice and also just knowing I think that um, you know, common saying of um, you know, putting on your own oxygen mask first. You can't pour from an empty cup. You have to be able to take care of yourself in a way that feels good so that you can really be there for somebody else. Um, I think Barbara, like you were saying, it's really, really, really hard to take care of somebody else when you're not quite taking care of yourself.

SPEAKER_03 55:47

I love that. All right, sorry, mom, go ahead. No, I just want to say it's also such an amazing expression of love to take care of someone. And um, and and that's our humanity. I mean, love and family and friends that helps us. That's the spirit of humanity of caring for one another and not being isolated, right connecting, making those connections and doing what you can to take care of other people. But also keep keeping in mind what you just said, you gotta you gotta take care of yourself as well, so you can be a good caregiver.

SPEAKER_04 56:26

Absolutely. And um, you know, I can't imagine, Bridget, what that's like actually the emotional toll of you know, you work with exclusively gynecological cancer patients and people going through crisis every single day. So I I imagine you have a considerable amount of weight ever each day and every day, you know, to deal with when you get home from work, you know, listening to to hours and hours of people and guiding them through, you know, you for me, you guided me through, I think probably the single toughest moment of my my life so far, um, and and your support um really uh changed the outcome. I I was so fortunate to have have worked with you really. Um and I love that you you brought up cooking because um that's that's for me also something that is incredibly therapeutic for me. Um but during my diagnosis, I I couldn't do a lot of cooking. Um I did it was a dealing with a shoulder injury that I um that was improperly diagnosed and got much worse during my chemo, but also the neuropathy made it so I, you know, I couldn't chop vegetables, you know. I I couldn't do a lot of the things that maybe would have um helped give me an outlet. And I just I would have shared just a like I think I watched um uh uh literally hundreds of hours of chopped. I I watched like 30 seasons of chopped during my cancer diagnosis because that you know that's to me something like cooking is fun for me. So like watching and also with my my like weird chemo brain, and you're just like you're literally so forgetful, like it's hard to like follow a plot of like an actual series. So, like, you know, these these competition shows where it's like you know, there's kind of one thing and you like it's exciting in the moment you're watching it. Um like for me that was very therapeutic. I'd sit like I'd take Epsom salt baths every day with like marbles, and I'd be like, you know, use massaging my hands with the marbles to help all of this help detox, but I'd sit there with my iPad in the bathroom. We had a music stand with iPad in the bathroom, and I just watch, you know, like because I needed to not be on my phone, my hands needed to be in the water, so that's what I would do to make sure that I stay watching hours and hours of chopped. That's great. I but you know, now that I can cook again, like I've learned, I picked up a lot of like, you know, great tips that I'm carrying into the kitchen and like you know, and it and having that ability to like there's so many things that were taken from my life, and and each day I like when it dawns on me how much I wasn't able to do that I'm now able to do, it's just like it's just this huge sense of gratitude, but also like having uh like this realization of how much I've overcome, which is it's it's really significant. So um any any final thoughts from the two of you before we wrap up?

SPEAKER_03 59:34

Just you you've your journey has been inspiring to Nina, and the fact that you're sharing it is really important. Um your determination to take back your life, to have a the life that you want, despite all the physical uh the toxicity and the that you've had to deal with and the the pain and problems that you are tackling it one second at a time and uh keeping so positive. I applaud and um and I and respect and appreciate so much what you're doing. It's inspirational. Thank you for sharing it.

SPEAKER_04 1:00:10

Well, I I think that resilience comes so much from you and and and watching you and and watching your strength and watching and and experiencing the support you've given to me and the rest of our our family. So I I think it's it's very much mutual. You're your huge inspiration and support to me.

SPEAKER_00 1:00:32

Thank you.

SPEAKER_04 1:00:33

Love you, mom.

SPEAKER_02 1:00:34

I love you too, Nina. And um Janina, I want you to know it really has I take so much joy in my work. Yes, it's it's challenging as you touched on, but it's such an honor for me to be able to be a part of people's lives as they're going through something really kind of unimaginable. Um, so it truly was and continues to be an honor that we've gotten to work so closely together. And it just thrills me that you are, you know, back to it. And yes, I know you're still working at it, but that you're you're really you're back to it. And um I can just kind of I can see the joy, you know, in your face. And that's that's really a beautiful thing to see. And now, Barbara, of course, meeting you now and seeing the two of you together, it's just uh an honor for me. So thank you so much for asking me to uh be a part of this.

SPEAKER_04 1:01:24

Well, thank you both. And uh I'll just I'll just share. I I finished chemotherapy almost exactly a year ago. So just giving those of you who are in your journey an idea of what it took to sort of um after chemo, post-chemo, coming back to your life. It's it's been a really, really tough year, but um, you know, I I have been able to um get back to performing and traveling. It's been really hard, but I'm I'm doing it and I'm super proud of myself. Um my my recovery has been anything but linear. There's been lots of ups and downs. There still are. I've got a a long way to go, but um but feeling very, very um powerful in where I've I've come and have gotten so much control back in my body, in my mind. Um, I wouldn't have been able to do an interview like this a year ago because I just wouldn't have been able to like keep my train of thought, or I'd have to like really have prepared, you know, and the time of day would have been super important. So um, you know, I'm sure those of you who are listening and and have gone through this are probably nodding your head right now, like, yes, I I know what that's like. So um, so and and if that's you, stay with it. Um I I'm I'm praying for you and you know, just sending collective vibes to everybody who is going through this, who's supporting somebody through this. Um, you know, uh you you've you've got this, and I hope this episode was was helpful in terms of of guiding you. So I'll just close out by saying thank you so much for listening to this episode of What to Know down below. Uh a special thanks to my mom, Barbara Weinberg Baerfield, and to Bridget Gabe from Memorial Sloan Kettering for sharing your time, your insight, and your personal experiences with our listeners today. Uh if you're a caregiver or supporting a loved one through cancer, know that you are not alone. There are resources, communities, and people ready to help you navigate this journey. And Teenage Wish and this podcast is a pretty great one. They've really given me so much support, and I'm so grateful for this platform to share my experiences. Um, and we hope that by sharing our experiences today, we can help others who are navigating a similar path feel a little less alone. If this episode resonated with you, uh, we would love to hear from you. So you can leave a comment below or message us on Instagram at Tina's Wish. Again, this Instagram at Tina's Wish. Uh, and don't forget to like, follow, or subscribe wherever you listen to podcasts so you never miss an episode. And uh thanks again. Thanks again, mom. Thanks again, Bridget. Uh, thanks to Tina's Wish for having me today. And that's a wrap.

SPEAKER_01 1:04:34

For more information about gynecologic health, visit Tina'swish.org slash what to know. That's Tina'swish.org slash W H A T T O K N O W. And like, follow, or subscribe wherever you listen to your favorite podcasts.