National Family Caregivers Month With Megan-Claire Chase
During National Family Caregivers Month this November, Oncology Data Advisor is celebrating the caregivers of patients with cancer and advocating for increased awareness, support, and education regarding the caregiving experience. In this interview, Megan-Claire Chase, patient advocate and member of the Oncology Data Advisor Editorial Board, shares her experience of being a caregiver for her mother, how her perception has changed before and after her own cancer diagnosis, the importance of prioritizing mental health, and messages for clinicians who seek to provide increased support for their patients' caregivers.
Oncology Data Advisor: Welcome to Oncology Data Advisor. Today, we're having this interview for National Family Caregivers Month, and I'm joined by Megan-Claire Chase. Thanks so much for coming on the show today.
Megan-Claire Chase: Thanks again for having me.
Oncology Data Advisor: In light of this being National Family Caregivers Month, would you like to start off by sharing what your experience has been with being a caregiver?
Ms. Chase: Sure. First of all, my mother is an ovarian cancer survivor, but then when I was in college in the late 90s, she was diagnosed asymptomatically with a myeloproliferative neoplasm, or MPN—it's such a mouthful to say—called essential thrombocythemia. She was okay for a while because she was asymptomatic, but then in 2003 is when she got really, really ill. And I was a whole coast away. Back then, in the early 2000s, I was living in Los Angeles, but she didn't realize I had little spies everywhere, because I'm an only child of divorced parents and I knew that she wouldn't tell me what's really going on with her health. That's hard when you're an only child. I was hearing news, like she'd had a surgery because it was affecting her spleen and all this other stuff.
I'll never forget it. It was November, and I had come home for 10 days for Thanksgiving from the West Coast. I just looked at her and I thought to myself, "Oh my gosh." I could really see how this cancer was affecting her, especially with the fact that it's hard to treat, particularly back then. I was like, I only have one mother. To me, family comes first always, so I moved back to Georgia. I never wanted to come back to Georgia, but I did. It turned out to be a wise move, because later I would also need my mother to be a caregiver/caretaker for me. We were ultimately doing it at the same time when I had my own breast cancer diagnosis.
We went to the same oncology office, and that was a very odd moment because the woman at the front desk recognized my mother and was like, "Hey, you don't have chemo today. You come in next week." I was like, "Oh, no, it's me, her daughter. I'm actually here to see the breast cancer oncologist." Just the look on that woman's face of seeing mother and daughter—I was like, "Yeah, this isn't the kind of bonding we had in mind." But I can tell how much my view of being a caregiver/caretaker changed after I was diagnosed.
Oncology Data Advisor: Thank you so much for sharing the story. What are some of the ways that the experience has changed for you before and after your own diagnosis?
Ms. Chase: Before, it was really hard for her to give me information, because it doesn't matter how old you get, your parents will always see you as their baby, even adult baby. Back then, she really wouldn't give me much information. A lot of times I was in the dark, and I was just visually seeing the impact or hearing little birds telling me things, even once I moved back here. I used to never understand her fatigue. I would often get upset and say, "Gosh, I just want to go out with you. I just want our mother-daughter bonding," not understanding how insane that fatigue is.
A lot of times I would get impatient. We don't live together—I want to make that loud and clear, we already agreed that just can't happen as an adult (I love you, mother!). But I didn't have a lot of patience. Or we'd go to a restaurant and she wouldn't eat much, and I'd be like, "Gosh, I can't believe you're not eating." I didn't understand how much it took for her to even get ready so we could go and eat. Then she was scared to eat because she didn't want to get sick at the restaurant, which I didn't realize. Once I went through stage IIA invasive lobular breast cancer, I got it. I really got it. It makes me sad that it's only now that I've experienced it, because you shouldn't have to experience it to have empathy.
I think it's hard on the child because the parent doesn't want to feel like they're the child and that you're trying to tell them what to do. It's been kind of touch-and-go sometimes. I'll try and say, "Hey, mother, maybe you should let me drive this time." "No, I want to drive." I'm like, "Okay, but I can see that you're really fatigued today." A lot of times I have to figure out ways to phrase things to say, "I see you need some help here, but I know you're still very much your own person and independent." Her brain is as sharp as tack. That's been the juggling that I've had to do.
I would say the good news—pre-cancer, she wouldn't share her lab work with me and wouldn't really even tell me when her appointments were. But then after my own cancer, and now that hers has progressed—now it's an MPN-MF, myelofibrosis—she now shows me her lab work. She tells me her schedule of going to chemo and when all of her doctor appointments are, and she's finally using me to actually take her to appointments and things. That's what I used to get really upset about—I was like, "I moved back here for you and you won't even let me drive you to an appointment." But I get that she still wanted that independence.
Now she is having to reconcile that she is getting older, and again, that the cancer progressed and that's it really affecting her breathing and causing fatigue. Now she gets dizzy. We still do things, but now when we plan something, if she's not feeling up to it, I get it. Also vice versa, she does that with me too. There are times where she might get that second wind and I'm feeling fatigued. It's just a deeper understanding now of what we both go through physically. But then it's also scary because I'm looking at her lab reports, and I understand what I'm looking at. Pre-cancer, I didn't really understand when she would show one to me. I didn't really understand what I was looking at. Now it's almost scary because I feel I know too much. I have to make sure I don't freak her out when I'm reading them, because I know she's watching to see if I'll freak out. I'm trying to tell myself not to look upset or make a facial expression. But she can sense my shift in energy, because I'll just be like, "Okay, so what's the plan?"
Oncology Data Advisor: I'm sure there must be very delicate balance between understanding more about what she's going through and also understanding too much sometimes.
Ms. Chase: Absolutely. We went to the Leukemia and Lymphoma Society's Southern Blood Cancer Conference, and I've been going to that since well before she got really, really bad with her symptoms. I would go because I am a big believer in knowing about other types of cancers, but also pre-cancer, I wanted to know as much as I could about her cancer. This classification is rare, so it would be hard to find materials. Now I'm really happy because in the past two years—and they just had it here in Atlanta in October—there was actually a session specifically for this classification of blood cancers.
That was really helpful, because sometimes I want my mother to change her oncologist. I'm like, "I don't know if you're getting the best care." But I get that as a patient too—when you have that connection with that one oncologist, it can be really hard, especially when it's been years with that oncologist. It's hard to change, especially when it's a whole different cancer center. That's kind of where we are right now. So, I think it was really helpful for her to hear from one of the top experts here in Georgia. I was like, "Mother, that's the one I've been trying to get you to see." Now that she heard that, she was like, "Okay." I said, "It's not like you have to get rid of your old one. They can work in collaboration." I think that's something a lot of people don't realize when you're a caregiver or a patient, that if you really want to see another oncologist, it's not like you have to totally drop the one that you had built all that history with. So, we've had that to deal with.
Then again, just recognizing that she's older, there was a moment recently when I realized I'm suffering from anticipatory grief. I only noticed that a couple of months ago; I think it might've been after her birthday or my birthday. Now I'm saving all my messages and voicemails from her, and I have all these cards from her. I'm always thinking, "Oh my gosh, what if this is the last?" I had to tell myself, "Okay, that's not healthy. She's not dead yet." But I kind of want to prepare myself, because I mean, I am an only child. That's it. My cancer took my fertility; I don't have any human children. My cat, Nathan, he may make an appearance or not. He may be like, "Mama, what do you mean? I'm a cat?" But it's scary for me. We have had many conversations. I know where the wills are; I know where the safety deposit box is. She's got everything written out for me.
It's hard to have those kinds of conversations with your parents. For one of my birthday gifts, she was like, "Okay, let's get your will done." I was like, "I don't need a will." But she said, "Oh yeah, you do." It's hard to think like that, but we actually have a plan. We have a game plan if something were to ever happen in public. I made sure she got a bracelet now that says that she has blood cancer, and we have it on her license too. I don't know if everyone does that, but in Georgia, we have our blood type on our license. We have our plans of actions for any type of emergencies. But it's a hard conversation to have because you recognize that they're getting older and that you're also getting older.
Sometimes it does wear on me because now that I'm a breast cancer survivor, I have a lot of my own health issues. I don't have anyone helping me. Sometimes I wish I had a caregiver who could physically help me, because my mother lives about 20-30 minutes away, and I'll go to her house and empty the garbage or do whatever else she needs. I come home and I'm exhausted, but then I've got to get my own stuff done. I work full time, and it's a lot more tiring. It's because I'm in a body that is not healthy.
Before, pre-cancer, it was different. I had that energy. Cancer ages your body so much, so it's hard to know if this is because I'm older or if it's from the cancer or the 10 million other illnesses and pains that I deal with from the collateral damage. That's been really hard, especially lately. I love it when she wants me to take her to doctor appointments, but then I'm rearranging my schedule or I'm having to wake up really, really early to get to her so that I can do two hours of work and then drive and get there. All of that is exhausting. It's a lot when both child and parent have both been through cancer. One is over cancer but still has health issues, and the parent is really declining and leaning even more heavily on the child. I just feel that weight now.
Oncology Data Advisor: Is there anything that you've done or any outlets that you've taken part of as a way to deal with and cope with all these stressors, both physical and emotional?
Ms. Chase: Therapy! It's all about that mental health. I'm a huge proponent of mental health. It helps me with coping skills, because I need new coping skills just for myself and then with my mother. I want to make sure that I'm not treating her like a child, because this woman has two PhDs. My mother is brilliant. Sometimes I just stay quiet, because I've learned how to recognize those signs. My therapist helped me identify when I start to feel frustrated with my mother. He just says, "Stop. Let her do her thing. You'll be there for when it finally clicks to her that she does need the help." I've had to get out of my own way. Sometimes we'll be walking and she'll say to walk ahead of her. I'm like, "Well, what if you fall?" She's like, "Just walk ahead of me." Then I have to tell myself, well, she will yell out if she needs help. But then I keep feeling like people are looking at me and saying, "You're a bad child." They don't even know me; that's just in my head. I have to keep reminding myself as I learn how to cope with all of this that I am not a bad child. I'm a darn good daughter, and no one is judging me. Or maybe they are, but I shouldn't care about that because at the end of the day, it's about supporting my mother.
I've also learned with those coping skills to say, "You know what? I'm actually tired. I'm fatigued today and I cannot get to you until maybe later in the afternoon." Sometimes she'll ask if I can come over on a weekend, and I say, "How about I come in the evening so that I've got some time to rest a little or get some things done before I lose all of my energy?" Those have been some of the light ways I've been coping and trying to manage my own needs, and then her needs too, with limited energy.
Then there are other things too. I can't believe I'm even saying this, but going out in nature, because I am so not a nature person. I blame one of my cancer besties, Marc, who really got me into wanting to be one with nature. I found myself. on the weekends where she is too fatigued and doesn't really, want any company, which I get, just going out in nature and sitting for a little while. I'm a big believer in journaling, so I'll journal a little just to get some of that off my chest, because I try really hard to not bring any additional negativity to her, even though she knows me like a book anyway. I try not to have toxic positivity either. We very much stay in the reality of what's happening and how she's progressing.
I am learning to enjoy those moments of solitude just so I can kind of process. It was a particularly difficult week last week; we had two appointments for her. They're trying to figure out why her breathing is so labored, and it's a lot for me just to see her in a wheelchair. She didn't want a wheelchair. I was like, "You know what mother? This thing is all the way down this hall and probably around another corner, so a wheelchair just might help." I think it was all in how I phrased it, but that's what I've learned through therapy and journaling, and then just trying to be a little bit out there with some nature to calm myself because I need the rest as well.
Oncology Data Advisor: It reminds me of what they say on airplanes, where you have to put your own oxygen mask on before you can help others put their oxygen mask on. You need to take that time to prioritize yourself too.
Ms. Chase: Yes! It's really hard, especially when you have that limited energy. I keep going back to that, because I thought that after surviving cancer, I would be able to revert back to the pre-cancer days when I was super fit and active. Instead, it's going in the opposite direction. That makes me sad too, because sometimes I just look at my mother and think, "Gosh, she looks translucent today." I'll make a big deal of us just staying home and watching a movie. I'll be like, "Mother, we don't have to go anywhere. You just tell me what it is you need and I'll try and get it to you. I'm happy just watching TV."
I think that takes some of the pressure off of her wanting to be that parent for the adult child and having new experiences, but also recognizing her limitations and my limitations. We'll start watching one of our British shows, and we'll start talking in our fake accents and still have a good time. We're still mother and daughter not, so it doesn't feel as much like patient and caretaker.
Oncology Data Advisor: Definitely. My last question for you for this podcast is, do you have any words of advice or messages for clinicians about how they can provide better support and empathy for their patients' caregivers?
Ms. Chase: Oh my goodness, yes. I tell my mother all the time, "Can you record something on an app during your appointments?" Or if I'm there with her, "Can you give me a recap of what you told her when I wasn't in the room?" I still need to know what is going on with her health. What do I need to know as far as what she can eat, what she can't eat, or what should she be having more of? It would also be great if the clinicians could make sure that they're explaining or writing some notes or circling things on their lab reports that you just need to be made aware of. Is she neutropenic? Well, then she can't be out at all, or she always needs to have a mask on. We need to know what we should do or be mindful of when she comes home.
The clinician should really be engaging us as caregivers when we're there, because again, the patient is hearing a lot, or they may not even be saying what they really want to say at that time. Make sure that you're also engaging the caregiver and saying, "Her counts have gone up on her red blood cell count, but her white blood cell count is super low. That's why we're trying to target it." Keep talking and explaining, because especially for patients who have had this cancer for years, it's an ongoing cancer diagnosis that can progress, and we need to be reminded of that. It would be great if they could tell us, "You know what? Here are some things I noticed about how they're walking. So maybe if you can make sure you're helping them this way or be on this side of them."
There are so many smaller things that I think the clinicians could tell us. If it's not the actual oncologist, then the nurse could tell us, or direct us to the social worker. So many people don't even know that that is an option, so if you have a social worker, please do. Or you can direct us to the nurse navigator to give some guidance on the patient. It's about recognizing that we have a stake in this too. We want to help them as much as possible while also making sure that they still have autonomy.
Oncology Data Advisor: Absolutely. This is great advice. Thank you so much for sharing all of this about your experience as a caregiver and your mother's experience as well. These are all really important messages, and I'm sure it'll resonate with a lot of our audience to hear them. Thank you again for coming on today to talk about this.
Ms. Chase: I really appreciate you spotlighting the caregivers and caretakers. I am happy that I was able to share my perspective of being a caregiver pre-cancer and then going through my own cancer experience, now really understanding on a whole different level what it's like for my mother.
Oncology Data Advisor: Absolutely. Thank you so much again, it was wonderful talking with you today.
Ms. Chase: Thank you so much, Keira.
About Megan-Claire Chase
Megan-Claire Chase is a patient advocate and the Breast Cancer Program Director for SHARE Cancer Support, a nonprofit organization that seeks to empower women with cancer by providing public education and support for patients and survivors. As a survivor of stage IIA invasive lobular breast cancer, Ms. Chase became involved with patient advocacy work after completing her treatment. She is a prolific writer, blogger, and public speaker, having been featured in the New York Times, in People Magazine, and on PBS's "Beyond Cancer" episode of "Stories from the Stage." Her story and work are documented in her blog "Life on the Cancer Train."
Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.