Mother's Grief: Loss Through the Lens of Motherhood

Listen to JCO's Art of Oncology article, "Mother's Grief" by Dr. Margaret Cupit-Link, who is an assistant professor of pediatric hematology/oncology at Cardinal Glennon Children's Hospital of St. Louis University. The article is followed by an interview with Cupit-Link and host Dr. Mikkael Sekeres. Dr Cupit-Link shares a pediatric oncologist's experience of a patient's death through the new lens of motherhood.

TRANSCRIPT

AOO 26E03

Narrator: Mother's Grief, by Margaret Cupit-Link, MD, MSCI

Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. I'm your host, Mikkael Sekeres. I'm professor of medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami.

What a treat it is today to have joining us our third place Narrative Medicine Contest winner, Maggie Cupit-Link, an assistant professor of Pediatric Hematology Oncology at Cardinal Glennon Children's Hospital of St. Louis University to discuss her Journal of Clinical Oncology article, "Mother's Grief."

Both Maggie and I have agreed to call each other by first names.

Maggie, thank you for contributing to the Journal of Clinical Oncology and for joining us to discuss your winning article.

Maggie Cupit-Link: Thank you so much for having me and for choosing my article. It's an honor to get to speak with this group. I know a lot of our listeners have a lot in common with us in our profession, so I'm excited to be here.

Mikkael Sekeres: We're excited to have you. You are such a terrific writer. Tell us about yourself. Where are you from, and walk us through where you are at this stage of your career?

Maggie Cupit-Link: I grew up in a small town in Mississippi called Brookhaven, and I ended up attending college in Memphis, Tennessee, which is important to note because I was a pre-med student when I got diagnosed with childhood cancer, Ewing sarcoma, at the age of 19. And so that really shaped my career goals. And I was treated at St. Jude Children's Research Hospital, which is very formative as well, given that I was surrounded by childhood cancer patients. I ended up doing my medical school at the Mayo Clinic Medical School in Minnesota, which was very cold for me but a wonderful experience.

And then went to St. Louis to WashU, St. Louis Children's for my residency, and then back to Memphis for my fellowship at St. Jude. But now I'm back in St. Louis at the other hospital, Cardinal Glennon, which is affiliated with St. Louis University. And my husband's originally from St. Louis, so it was always a dream of his to be back here. And once I ended up here, I really have loved St. Louis as well. So this is home for us and our two babies who are ages one and two, and they are one year and one day apart exactly.

Mikkael Sekeres: Oh my word. Well, you are definitely in the thick of it, aren't you?

Maggie Cupit-Link: It's a very busy, chaotic life, but I'm very grateful. And so that makes it worth it.

Mikkael Sekeres: That sounds fantastic. Well, I'm calling in from Miami today, so believe me, the thought of being in Rochester, Minnesota is not very appealing in mid-February.

Maggie Cupit-Link: I believe that. I'm glad I'm not there right now.

Mikkael Sekeres: Gee, I didn't know about your history of having cancer yourself. What was it like to return for fellowship at the place where you yourself were treated?

Maggie Cupit-Link: That was an incredible experience for me. It was very emotional as well. I remember the first day of fellowship getting a tour and crying throughout the tour. More tears of joy, but it was, it was really surreal. It was really special. And I got to learn from some of the doctors who treated me, which made it really special as well. I'm really glad I got to train there and to be at a place with such a large volume of pediatric oncology patients was a really great learning experience.

Mikkael Sekeres: I wonder, infrastructures, buildings change over a few years, particularly in medical centers. Was there ever a moment when you were talking to a patient who was sitting in the same chair where you were sitting when you were a patient? And was that something that you were open to sharing with people?

Maggie Cupit-Link: All the time, on all accounts. Yes. The infrastructure has changed. It continues to grow significantly, but the clinic hadn't changed at that time. I think it will in the next couple of years. But the solid tumor clinic where I was treated was exactly the same. And there were many times where I took care of sarcoma patients and Ewing sarcoma patients who were teenagers as I had been in the very same rooms and times where I learned from my own oncologist as he was teaching me and training me. So it made it really special.

It made empathy a big part of my experience. And I think it is for all of our experiences in oncology in particular, but I think that empathy has always been a huge part of my job and something that comes to me naturally, which is a gift. But as is sort of alluded to in my piece that we're discussing today, can be difficult at times. Empathy can also sometimes be a curse when it's hard to turn off, and that's been something as a mother now that I've really had to learn to cope with is like figuring out when my empathy might not serve me in moments and might not serve the patient in moments, and when it is an asset and a gift.

Mikkael Sekeres: Empathy at the deepest possible level, having walked the same path your patients have walked as well. Really a remarkable story, Maggie.

Maggie Cupit-Link: I'm very blessed to get to be alive and well, but especially to get to have a job that's so meaningful to me and hopefully can share my experience in a way that helps my patients.

Mikkael Sekeres: And you share it through writing as well. When did you start writing narrative pieces?

Maggie Cupit-Link: I started writing a lot when I was a cancer patient for more like a journal experience. And I had a CaringBridge page, which is one of these social media pages where families update their friends a lot on what's going on. And I started journaling daily, and then ended up publishing a book of my experience as a patient. I had also done a lot of writing of letters to my grandfather who's a retired professor of Christian philosophy because during my illness, I was really struggling with my faith and having a lot of questions as we all do when encountering children with cancer, "Why? Why God?" And so the book is actually called Why God? Suffering Through Cancer Into Faith, and it's a collection of narratives that I exchanged with my grandfather. And his part is more philosophical, and mine is more raw and emotional and expressive of the grief that I was feeling at the time as a patient.

So that was the first big time I did narrative medicine, but I've found myself continuing to do so as a way to cope and process things that I go through. And the most recent one before the one we're discussing today was a piece about fertility that was published in JCO Cancer Stories and also I got to do the podcast for that piece. And that was about my experience losing fertility as a patient and how that has impacted what I tell patients about fertility and how I counsel them about possible fertility loss. And the plot twist there is that I actually have two miracle babies that I birthed for some reason after 13 years of menopause. So now I'm not infertile, but I'm very passionate about fertility as well.

Mikkael Sekeres: Well, I remember that essay. I also remember how impactful that was to a lot of people who read it and how helpful it was. And gave a lot of people hope.

Maggie Cupit-Link: I think hope is very, very important and necessary in the realm of cancer.

Mikkael Sekeres: My word, you have so much that you could potentially share with your patients on their journey. Have you also been open to sharing your faith with them?

Maggie Cupit-Link: Absolutely. I am. I think that it's something I'm really cautious not to push on anyone, but whenever patients bring up faith and want to talk about that or when they introduce that as a topic and make it clear that that's something that they are thinking about, then I'm definitely very open about that too.

Mikkael Sekeres: Well, that must be a comfort to them.

Maggie Cupit-Link: I hope so. It's a comfort to me as well. For me, I don't know how I would do this job and lose patients and children to death if I didn't believe in something more.

Mikkael Sekeres: It's beautifully said.

In this essay, you make a close connection to your patient and his mother when you write, "I imagined my own son contained in a hospital room, attached to an IV pole, vomiting from chemotherapy. I could feel the warmth of his skin against mine and the weight of his body on my chest. And as I looked back at Tristan's mother, I could only support her decision to hold her baby." What is the importance of this connection to patients, and are there any downsides? In other words, you know, in medical school, we're often taught to keep a distance, or there was an essay I wrote with Tim Gilligan, who's a GU oncologist and this incredible communicator, where we wonder if all the communication classes we're exposed to in medical school actually undo our natural communication and our natural connection because we figure, "Gee, if we have to take all these classes on communication, maybe we've got to communicate differently." What is the importance of this connection to patients, and are there any downsides? Like, should we keep a distance or not?

Maggie Cupit-Link: I don't know if we should, but I know that I can't. This is my gift and my curse. I think that taking care of someone with a sick baby, especially as a parent, is so human and so full of emotion that it's not possible for me not to feel that connection. Now, I do think there's a point at which I have to be careful that what I'm doing and what I'm expressing doesn't make it harder for them. I think it's important for them to know that I feel for them and that I am having these feelings, but I don't want it to become about me when I'm trying to help them. So I once in one of these medical school situations was told that the moment the family begins to comfort me might be a moment that I've known I've gone too far. And so I think that's a rule of thumb I think about is like, if I'm crying in this moment with this family, does that make them feel loved, or does that make them feel like they need to worry about me? And I think most of the time it just makes them feel loved, but that's sort of the tension there.

I think when it comes to me too, I've been unable so far to put up boundaries to protect myself emotionally. I don't know that I'm capable of that, but more importantly, I don't think that's authentic for me. And so I don't do that. I'm trying to process and grieve so that I can cope and continue to be the doctor and person that I am. But I refuse to put up emotional walls because I don't think that will serve the patient or be authentic to who I am as a person.

Mikkael Sekeres: You bring up a couple of really important notions, and the first is authenticity, being true to ourselves. And if we're not true to ourselves, our patients will see through that and wonder if we're not being true to them. And also having our antennae up to get the pulse of the room, to see how people are reacting to what we're doing and making sure that we're serving our patient's needs more than we're serving our own needs when we're actually in the clinic room with our patients.

Maggie Cupit-Link: Definitely, I agree. And and those scenarios in medical school, I remember just thinking to myself that it didn't make a lot of sense to me and that I was lucky that this class wasn't meant for me, that I'll just do what I feel is appropriate. And I always did really well in the simulations, but I had no way to articulate why I knew what to do. It just, for me, I was so lucky that part came naturally, and I think it does in many of us who find medicine as a calling. But I don't know how to teach or learn that.

Mikkael Sekeres: Well, you've seen it from the other side as well. I mean, you strike me as being a naturally empathic person and someone who's tuned into other people's emotions. But you've also been there. You're more tuned in than I am, having been someone who's had cancer. I've certainly had close family members who've had cancer, my mom has lung cancer, for example. So I've been in the role of somebody in the room who's supporting somebody with cancer, but I haven't myself had cancer the way you have.

Maggie Cupit-Link: It definitely impacts my empathy. And I think that I was surprised after becoming a mother how much that also changed things for me and impacted my empathy further. Until you're a parent, you really don't know the depth and intensity of your love for a child or a person. And it was only then that I realized how heartbreaking it might be to lose a child. It's very difficult to suppress that empathy. And that's when it might not be helpful sometimes is when I'm leaving work and thinking about someone who lost their baby and knowing that no matter how much I empathize with them, it's not going to fix it. It's been the first time in my career and maybe my life where I've had to tell myself that maybe it's okay not to have empathy in this moment. Like, maybe I should turn it off for a little bit so that I can relax and enjoy my baby.

Mikkael Sekeres: My God, it's such an interesting perspective. I think as oncologists, we have this different perspective on illness and, and if we're smart about it, if we're really focused and in the moment, we appreciate the aspects of life and realize how precious they can be. And that can be a lovely thing and something we pass on to our kids. I will tell you, my own children have accused me of brushing off some of their maladies with the refrain, "Well, it may hurt you, but it's not leukemia."

Maggie Cupit-Link: I've heard that's common with physician's children, but it takes a lot to get a rise out of the parent.

Mikkael Sekeres: You write at one point in the essay, "At first, I believed that I had no right to grieve in this way, that it was his mother's grief, Tristan's mother, not mine. I reminded myself that I was not Tristan's mother. I did not give birth to him or name him." Now, we recently published an essay about grieving called "Are You Bereaved?" by Trisha Paul, where she also wonders whether we as oncologists have a right to grieve. What do you think? Do we?

Maggie Cupit-Link: I have to note that Trisha and I were co-fellows together in our training, so I'm happy that you mentioned her. And I need to go read that essay. I haven't read that one, so I will.

It's weird to wonder if we have the right to grieve. My grandmother is a psychologist, and I remember as a child saying like, "I know I shouldn't feel this way, but" about some random thing. And I remember her saying, "Feelings aren't 'should'. Feelings just 'are'." So like, maybe it doesn't matter if we should or shouldn't, but if we are grieving, we're grieving.

I think in some ways it feels like I don't have the right to grieve because I have this wonderful, happy life. And this can be true of survivorship as well when I'm taking care of many children who won't get to be survivors, especially because I care for a lot of sarcoma patients. But I often wonder like, "Am I allowed to be this happy," or "am I allowed to not be happy because there's so much grief in their lives?" So it's hard. I feel this tension often like, I'm not allowed to grieve as much as this mom, but also I better be really, really happy because I'm okay and my baby's okay. It's hard when we compare our emotions to other people's who are going through different things. But it, but it's hard not to wonder, like, "Am I allowed to feel this way?" "Am I supposed to feel this way?" For me, that's when writing is helpful. Just writing down what I feel in great detail helps me move through the feelings, I guess.

Mikkael Sekeres: Part of the processing of it.

You described the code call for your patient vividly. You know, you draw us as readers into your essay and into that moment. We've all been in that moment. I remember when I was just talking to somebody about when I was in the intensive care unit, when I was a resident, and how at that time, a psychiatrist actually met with us every week to help us process what we were seeing in the intensive care unit, which was really remarkably forward thinking for how long ago I trained.

Maggie Cupit-Link: That's really great.

Mikkael Sekeres: How did you process it in real time and afterwards though?

Maggie Cupit-Link: That day, even now, an aspect of me was dreading this conversation because I feel nauseated when I think back to that day, to that code, and I feel like I'm going to cry. And I don't feel like that in every code, but I think it was because of the parallels between the little boy and my baby. To note, my baby, Houston, he is a big, bald, fat faced baby with a binky in his mouth at all times, and Tristan was a fat, bald baby with a binky in his mouth at all times. And so even though there was a bit of an age difference, when I saw Tristan, I just thought of Houston, and I couldn't separate that.

I feel often when I'm doing a lumbar puncture or running a code in real time on a patient, I can sort of dehumanize to the degree that's helpful where I just do what needs to be done and put aside the ick feelings. But with that child, in that code, I couldn't. And luckily I didn't have to do anything but stand there and tell them when to stop or just be supportive, but I felt sick. I felt like I couldn't do anything to help. I didn't feel like a doctor in that moment. I felt like a family member of that child. And that was really difficult.

I was so lucky, and I don't know how much the piece reflects this, but the other doctor who was there, the other oncologist, is a mentor of mine who's older than me and wiser than me and very experienced. And I call her my 'work mom' lovingly. She was there, and she stepped in and helped me and checked on me and made me feel like I could handle things. It would have been much worse without her there.

Mikkael Sekeres: We're fortunate when we do have our friends and colleagues to help process this because if you're not in this field, at that moment it's hard to understand just how deeply we can also feel the pain that our patients are going through.

Maggie Cupit-Link: Absolutely.

Mikkael Sekeres: And I do hope you'll retain that description of Houston for when you give the speech at his wedding because I'm sure he'd appreciate that.

Maggie Cupit-Link: The big fat bald binky baby. Yes. Houston is now in his 'mama phase' where if I'm not holding him at all times, he fake cries, "Mama," until I do pick him up. So it's been exhausting physically, but I must pick him up.

Mikkael Sekeres: I have to say it has been such a pleasure having you, Maggie Cupit-Link, join us to discuss your essay, "Mother's Grief." Thank you so much for submitting your article and for joining us today.

Maggie Cupit-Link: Thank you so much for having me, and thank you for everyone for reading.

Mikkael Sekeres: If you've enjoyed this episode, consider sharing it with a friend or colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you're looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen and explore more from ASCO at asco.org/podcasts.

Until next time, this has been Mikkael Sekeres for JCO's Cancer Stories: The Art of Oncology.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

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Show Notes:

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Guest Bio:

Dr Margaret Cupit-Link is an assistant professor of pediatric hematology/oncology at Cardinal Glennon Children's Hospital of St. Louis University.

Additional Reading:

It Mattered Later

Why, God?: Suffering Through Cancer into Faith, by Margaret Carlisle Cupit, et al