Elena | Reimagining Family After Cancer

AmbivalentAnimal RightsOverpopulation

Jul 29

Written By Population Balance

At age 27 Elena is diagnosed with an advanced cancerous brain tumor. As she confronts this life-changing and grief-filled reality, she also wrestles with the question of whether to bring a child into the world - balancing her love for children and the future she once imagined against her understanding of ecological overshoot, pronatalist pressures, and the profound uncertainties of life itself.

MENTIONED IN THIS EPISODE:

Elena (00:00):
There's so many conflicting feelings that I have post-cancer about life. I've had that difficult gift of awareness of the precariousness of life, and there's a lot of hesitation around thinking about bringing a child into the world and with that, knowing that I may not be there for all of it or that the burden of that would be on my husband and family and the child themselves, but there is still some piece of me that does feel unresolved about kids, and that is something I still sit with.
Nandita Bajaj (00:47):
That was today's guest, Elena. Hi everyone, and thank you for joining me. My name is Nandita Bajaj and I'm the host of Beyond Pronatalism | Finding Fulfillment with or Without Kids, an interview series in which through intimate conversations with women and men from diverse backgrounds, I explore how they are courageously and creatively navigating pronatalism, the often unspoken pressures to have children, whether from family, friends, or the culture at large. In each episode, I dive into personal stories with people who are forging unconventional pathways to fulfillment, including redefining what family means to them, whether that means being childfree or childless, having biological kids, adopting or fostering children or animals, or creating close-knit communities of friends and loved ones. And before we start today's interview, a quick announcement that we will be taking a short break from our publication schedule during the summer. The next episode after this one will be published on Tuesday, September 9th. Thank you so much for your ongoing support.
(01:54):
Hi Elena. Welcome to Beyond Pronatalism. I am so happy to have you here.
Elena (02:00):
Thank you, Nandita. I'm so happy to be here.
Nandita Bajaj (02:03):
For context for our listeners, you and I have known each other for a few years. We met when you took my Pronatalism course and I've been watching your journey for the last few years, and I just want to say what a huge source of inspiration you have been to me and just where you've taken this little nugget of information into broadening your own perspective, but also mine and all the others around you. I'm really excited to have you on finally.
Elena (02:37):
Thank you. That means so much to me because you said a little nugget of information and I feel like what you and your work and how it manifested in that course, especially because I feel like the nugget is such an impactful lens on how I've been able to navigate lots of different conflicting thoughts and challenges and interactions since that time. And I feel very much in process still with my thinking and feeling about bringing children into the world. And so I hope that if nothing else, I can validate for somebody else like me being in that space of uncertainty and how to hold many things at the same time.
Nandita Bajaj (03:26):
Yes, I agree and I appreciate that. I'm so glad that it's had that level of effect on you. And then to come full circle after all these years to have your story be platformed here, it means a lot to me. So let's begin with a brief background about you to help contextualize the story for our listeners.
Elena (03:48):
So I live in the Chicago-end area now, and this is also where I grew up. Now I live with my husband and our dog. I grew up with one sister and we had a lot of closeness as a family. My immediate relatives, particularly on my mom's side, lived really close by to us too. My sister and I were both homeschooled for a while as well. So we spent a lot of time together. And I remember as a kid when I would talk imaginatively about having babies one day I would talk about wanting to have two so that it could be like me and my sister and that they'd have a buddy. And I do have cousins on my dad's side, but my sister and I are the only kids on my mom's side, which I feel showed me from an early age that you don't have to parent a child to love and be loved by them.
(04:44):
I have really, really close relationships with my aunts that I'm so grateful for, and I didn't think about it as out of the ordinary until actually somebody in the course remarked on it and was like, wow, what great role models to have? And I was like, yeah, they were great role models for so many things, but I've always been very, very close to my mom. And so she really has been and still is my inspiration for wanting to become a mom myself. And I think during college was when I grew more interested in reproductive justice and other ideas about motherhood and maternal politics and identity. And that included getting exposed to organizations that were doing really unique work in communities with moms and babies. It also for me included artistic explorations of motherhood and birth and also inspired me once I graduated to participate in a volunteer doula program at a hospital in North Carolina and then had moved back up to the Chicago area, but I still was taking coursework about being in the space of abortion doulas and pregnancy-loss doulas.
(06:02):
And that was a new area of learning for me. And definitely those same themes and interests continued into my humane education graduate work. And prior to that, I had been still connecting to the concepts of family planning and choice making that were really on my mind for myself personally and then also in a broader political way in terms of making decisions about bringing children into the world as well as thinking about animals and speciesism and how we can as humans be more conscientious of how we educate ourselves and future generations on our impacts on the planet. And then thinking about reproductive justice from a human rights perspective made me so interested and excited for the opportunity to take the Pronatalism course and just learn more about how the cultural and institutional pressures around us might reify or reinforce certain expectations about childbearing. And even when those might be unconscious perpetuation of certain ideas, they're very impactful and can be harmful and if not understood or unpacked or identified even. And that was a big weight lifted I felt from taking the course just to have some language to talk about some of the concepts around making these choices and especially as I was leading up to getting married and just really thinking about timelines and priorities and how having kids would or wouldn't fit into that.
Nandita Bajaj (07:50):
Thank you so much for that background. Very, very helpful. And you started going into this question about the conscious or unconscious reinforcement around the idea of having children. And it sounds like both from the really positive upbringing that you had with the real close connection with your mom and then with your sister, you probably wanted to pursue a similar pathway in order to create that kind of a family. Were there also conscious or unconscious, subtle or overt pressures that you were feeling from your family or from your relatives, people around you?
Elena (08:34):
I thought about that and I come from a Jewish family and I think there's always stereotypes about really pushing the procreation. And I think there were moments where my grandma would ask me when we're going to get married and what else would be happening. But since she was a working mom and her mother was a single mother, I think she always had a complicated perspective on - she would be speaking out of both sides of her mouth about that. And so I feel like I didn't get a clear message as much as there was sort of this unspoken expectation that I had and that I brought into my relationship with my partner too, who had a really different upbringing and did not necessarily have the same feelings when we first got together of like, oh yeah, we're going to have kids together one day. And so even us having more conversations over time showed me how there were some things that I had just implicitly kind of took for granted as being expected or possible or what I would want, but I also spent a lot of time intentionally with kids. I'm the youngest of the siblings, and so I always had a desire still to do the big sister thing or caretaking and started babysitting a lot during college. At the same time as I was learning about these maternal identity things and books, I was also firsthand trying to just work with kids more and take on those kind of roles when I cook. And I've always loved being around kids and working with kids, and that definitely has informed and continues to play a part in my thinking about childbirth and raising children.
Nandita Bajaj (10:26):
Yes, that makes sense. And tell me a bit more about when you really had to confront this decision over the last few years in a way that you'd never expected.
Elena (10:40):
So my husband and I have talked since that time that if COVID had not been happening, if the pandemic wasn't in full swing, we probably would've had a kid even by the time that I was taking your course and we had just bought a house, we had gotten engaged the summer before, and so COVID really like for everybody on many different paths, the breaks were put on some of those big decisions. And the course was very helpful already in validating some of the pressures we were feeling and trying to ignore because of how overwhelming the pandemic was. In the meantime, I had been having some strange symptoms that started in January of that year, which was 2022, and I tried to do the best I could to just ignore them. I went to doctors and was often even backing up what I was saying to them about my experiences and saying, oh, I'm about to get married.
(11:50):
I'm probably just stressed or anxious and oh, I am tired from working so many hours. And they'd go, yeah, that's probably it too. And nobody really expected that there was some bigger underlying situation and that wasn't their fault, I don't think, because there was a lot of symptoms that I couldn't even fully articulate or understand myself what was going on. The main symptom being double vision, that started later in the spring and around the finals week for the course, which I ironically had done a presentation about this book called The Pain Gap that is about how women's concerns in the healthcare environment can be often passed off as something more individual or emotionally charged problem versus a bigger concern. But that weekend was the first time I really expressed to anybody that I was starting to feel like that I couldn't see very well. I was having issues driving where I would be driving with one eye closed, which is never a good thing though.
(13:00):
If you're doing that, that's probably a red flag. So I eventually made appointments because I was starting to have really bad headaches, and my husband and I proceeded to have our very small wedding with just him and I and my parents and his mom, and we went on our honeymoon. And during that time, other strange things were happening. My shoe kept falling off of my right foot, and it happened with two different pairs of shoes. And I thought maybe it's because I got some cheap flip flops at Walgreens and something's going on, but I couldn't explain it. And it was very strange, and the visual issues were really extreme and I was having a lot of dizziness and headaches, but it was a very joyful time too. And so it was two things happening simultaneously. But when we returned, I went to this ophthalmologist appointment and she referred me right away to see a neuro-ophthalmologist the following week because she noticed some signs of swelling.
(14:05):
And the following week right before my appointment, I had a focal seizure the night before I was scheduled to see this neuro-ophthalmologist where the right side of my body froze up. And thankfully we were at home sitting on the couch and eating dinner, and it only lasted under five minutes and it was scary. And I knew that I was seeing this specialist the next day. So we waited until then to get more information, and he suggested that I go to the ER to get an MRI because there was some type of issue happening and he wanted to make sure - it could be a brain aneurysm, it could be MS, something was happening at the neural level. So that day we went to the ER and the doctor did the thing they do in the movies, they told me and my husband to have a seat if we weren't already sitting and explained that they had found a mass in my brain and that they were going to do surgery the next day.
(15:13):
And so that was a lot of information to take in. And even at the time I was second guessing what it was, and I was saying, are you sure it's not just inflammation from my anxiety? How did this come up? And they confirmed that it's something they needed to operate on. So in the next 48 hours, I had a craniotomy, which is like brain surgery. And I went home that weekend and that started the process of recovering with PT and OT. And thankfully my motor pathways had shifted over substantially just because of the plasticity of the brain. And I was 27 at the time, so I was pretty young and had that on my side in terms of how my brain was able to adapt to the presence of the tumor, which allowed my surgeon to remove more of it, but he wasn't able to take out the entire tumor because a piece of it was right in alignment with my motor pathways for my right leg.
(16:14):
So I still have a piece of it to this day and that will remain there for now. And shortly learned also on a weird coincidental day - it was this day that Roe v Wade was overturned - that my mother-in-law and I have learned together that my tumor was cancer and that it was a great three brain tumor, which for brain cancer, it's in grades, not stages, and there's four grades. And so it was a high level of concern with the tumor, and that meant I was going to immediately start radiation and chemotherapy simultaneously. It was a lot to process at that time. And I proceeded with those treatments and right before the treatment started, I was trying to do all the things that I wanted to get done before I would be so occupied and potentially really exhausted by some of these treatments. And that included everything from getting my legs waxed to seeing my dentist, and then also seeing my OB-gyn who I had an existing annual appointment with.
(17:34):
But that appointment was going to take on a new level of significance because my care team had informed me that the radiation treatment or the chemo could potentially have effects on my fertility. But for me, that was not a big question of whether to do treatments or not. And I also felt that way about delaying treatment because if I were to take steps to preserve fertility, I would need to have started IVF right away and be doing shots and all of the steps involved with that before being able to begin radiation and chemo. And for me, that didn't seem possible at the time because I was still recovering from brain surgery. And to me the idea of embarking on more treatments before doing my lifesaving treatments for the tumor, that equation came out with wanting to go ahead and risk the possibility of losing the ability to conceive and birth a child naturally or potentially at all.
(18:52):
And that was a really hard choice to make in the moment since you're already losing a lot of imagined futures that you feel you were promised. And whether that makes any logical or rational sense at all, there's just things like I said before that I have kind of expected would be on the table and had to then really set aside and close the door and put it on the back burner with the thought that it could be permanently not an option. And it was difficult in the appointments that followed because every doctor I saw would explain to me the risk and the ways I could do the treatments now to preserve fertility and the specialist I could talk to. And there was a lot of conversation around that. And it was hard because I communicated to them like - my husband and I have discussed this and we're not interested in pursuing further treatment or anything at that time, and we'd like to just proceed with the treatment pathway for my cancer and not go into fertility preservation.
(20:04):
And because of the number of different practitioners you see, for one, you are seeing social workers, you're seeing your regular primary doctors, you're seeing your oncology team. And it was a question that came up almost at each appointment for that beginning of that period of time where I had the window of opportunity to press pause on the treatment proceeding and deal with the fertility stuff. And at the time, it caused me a lot of frustration to keep being asked the questions because it was already such a grief-filled choice. And simultaneously, I have heard since and even during that time from individuals who are feeling a lot of grief and frustration about not being asked about their fertility options or being informed that there were these immense risks with their treatment. And so it's an interesting example, and thinking about pronatalism helped me to have compassion and let go of my frustration when I would have people checking in with me about those topics.
(21:20):
And also people checking in who were not medical professionals, they're just people in your acquaintances or circles and asking about the side effects of your treatment and everybody wants to know. And I get it, that's what I would want to know too. If somebody's going through a big process, you want to know how they'll be feeling, what they'll be doing. And it's a known enough aspect of cancer treatment that I think people have that in their minds as a risk. And there was a lot of conversation about it and thinking about pronatalism helped me to bracket it as not something that people were individually invested in or personally intrigued about my situation, but that it was assumed that that would be a top priority. And that fact was not true for me in that moment, even though I was somebody who wanted and still has ideas and aspirations about being a parent.
Nandita Bajaj (22:21):
Wow. Yeah, that's a lot that you went through in such a short period of time. Within a few days, your life completely turned upside down from going through a really positive and exciting period in your life of being married and celebrating your honeymoon together to then coming back to this life-threatening diagnosis. But then on top of that, for someone who has for so long aspired to be a parent, yeah, I can really just appreciate the grief that would come with all of this information. Can you speak a bit more about what it's been like for you to hold that question as you have been undergoing treatment and what are all of the different thoughts that you're having, not just about your ability or not to have children, but everything else that you're dealing with?
Elena (23:17):
It's always a lot to think about. And again, speaking now being three years almost from my point of diagnosis, which I didn't mention before, but my pathology report that I received at the time stated that the prognosis for somebody with my grade of tumor was three to six years of survival time. And that felt kind of incomprehensible at the time, and it still is a little bit hard to really sit with that. And in certain ways thinking about mortality is something that has been a part of my life for a long time. I've always struggled with now what I would label as OCD, but I would at some point as a young tween, I had a realization of, oh yeah, I'm going to not be alive one day. And I really just obsessed on that fact for so long. And I had even had speculations and maybe a lot of people that do this, but what if I'm one of those people that dies young?
(24:21):
And so I had been kind of morbid of a thinker in different ways, even as I was still thinking ahead about baby names and other things that I would envision for my future. There were certain ways that those topics were not totally foreign to my mind. But also I was aware pretty quickly how different things would be from my peers in age. Because even as I was connecting with young adult cancer survivors or people in brain tumor support groups that were so fundamental to helping me cope through this journey with all of the overwhelming emotions and people who couldn't relate to having the rug pulled out from under you, there were times I remembered distinctly thinking and realizing early in the process that my body is never going to be the same again as soon as I finished treatment or even when I was concluding chemo, you need to wait at least a year before thinking about conceiving kids safely because of the toxicity of the chemo drugs.
(25:39):
So you have to have that year of a clean system before it's even really on the table from a medical perspective. So even in that short period of time right after I had finished my treatment and I was graduating from the Humane Education Master's program, so there was a lot of things happening, and meanwhile my husband is working and trying to hold things together since I left my job during my treatment, and even in the midst of all that, I started looking into foster care and foster to adopt scenarios and just went very quickly and very hard into that exploration. And we went as far into it as having somebody come to our house from the Department of Child and Family Services. We bought all the outlet plugs and fire extinguishers that we didn't have before to make our homes seem ready and suitable. And it was so complicated.
(26:43):
There was so much to think about. And there was also a lot for me and my husband to think about together. And there still is because even though every person has to deal with the fact that life is terminal, and every couple can imagine what would happen with their offspring if one of them was no longer alive or if something dramatic happened with their health and ability to care for themselves or a child, but for us, it wasn't a what if in the exact same way, but still having some research that shows that a large portion of people with my condition don't have decades ahead of them. And there's also a lot of hesitation around thinking about bringing a child into the world and with that knowing that I may not be there for all of it or that the burden of that would be on my husband and family and the child themselves.
(27:48):
And there's so many conflicting feelings that I have post-cancer about life, and life feels very precious. I've had that difficult gift of awareness of the precariousness of life, but there is still some piece of me that does feel unresolved about kids. And that is something I still sit with because I feel like there's parts of me that just wish throughout this experience, I'm like, I wish I was older because then I would have more insight into what to do with my life. And I feel like that is something I'm still grappling with trying to foresee so many different possibilities.
Nandita Bajaj (28:33):
Yes, of course. And you shared with me just a bit earlier that you're thinking about the burden that your husband might be left with or your child may be left with without a parent. Can you go into what kind of conversations you're having with your husband and your family about that possibility?
Elena (28:56):
Yeah. We've imagined the types of conversations that could be happening if I am gone and our imagined child is asking my husband, why did you guys decide to have me if you knew that my mom wouldn't be here? Or that you knew that this was a possibility? And we both discussed how we can think about, there are some reasons why, and there's things all the time that I think, oh, I want a child to experience this song or this food or being outside and witnessing these things in nature. And there's so many things about life that feel so worthwhile no matter the context, and it's a really hard question to sit with, but I think with our immediate context in mind that I really do understand now and in a different way than I did when I was freshly feeling the loss and potential of not having the ability to have children. I was more resentful almost of perspectives of people who were talking about how they fit having a kid in before somebody passed. And I was like, why would you do that? It seemed kind of odd to me, but now I understand it emotionally. I understand that perspective and how if you have the support, if you have the sense that it would bring everyone comfort, I can understand the motivation.
Nandita Bajaj (30:34):
Yeah, it's a very powerful analysis that you've done over the years. Like you said, cancer has highlighted for you your priorities, and in a way you've had to think about this decision in a much more intentional way than most people normally do. And one of the things that you mentioned earlier was this reverence that you have for life and the beautiful experiences of life itself and wanting to give that to someone. And if raising a child together was a possibility and you wanted to leave that legacy, can you share some more experiences that you've had exploring adoption and fostering opportunities?
Elena (31:25):
Yes. One thing that has been true maybe since the doula experiences I've had is I'm not grossed out by birth, but I also don't feel like I need to produce this child. Exactly. I think for me, the appeal is most in the raising of a child and even participating in the life of a child. Like the things that I savor in my imagination are going to sports games with your child or watching them perform in a concert or sitting around and watching a movie together or introducing them to different places or having them introduce things to you. That's something that I feel like is another thing that really has appealed to me about fostering. I think that because with fostering, if you are in a purely foster situation and not doing a foster to adopt situation, there's a lot of navigating of uncertainty and unpredictability that would come with that in terms of the goal being to reunite foster children with their birth families.
(32:37):
And for us, we really were trying to focus more on the foster to adopt path because we felt like as much as maybe we have a higher threshold for dealing with unpredictability and grief and loss, we also were like, maybe we're a little tapped out on that front as it is, or we're already coming in with some baggage there, so maybe it would be better if we were going to be their forever family. And that is something that we looked into and it can be really complicated state to state of what agencies tackle both of those things together and how that can create complex processes. And again, there's things with those processes even including with the foster process where you understandably need to state a certain level of health and wellbeing and projected health and wellbeing because they would like to match children with families who are going to be able to care for them.
(33:39):
I guess the adoption paperwork is not set up for people who have cancer to complete in a way that is straightforward because we don't know when our expiration date is. And I think having a support system might make more of a difference than your exact projected dates that you'll be expected to be living. And particularly with brain cancer, there is no remission really, because as the doctors have said, it's not an if, but when these tumors regrow, they are very persistent. So you have to live with that knowing. I will say that the one outlet for care that I've appreciated so much is having animal companions in our shared life and home. And our cat friend Macy, who was just passed away about six months ago, was so special, and she had her own medical challenges and was dealing with thyroid issues, and she was blind, and we had taken her for a lot of surgeries and she had to take a lot of medications.
(34:58):
And when I was going through my treatment, she was there by my side with the kind of presence that is something I will never forget and never be able to repay her. But she was really just my constant companion and very much like a soulmate. I always tell people that she felt like a combination of a grandma and a best friend and a baby and your sister all at the same time. It's just like a very multidimensional love and bond. After she passed, we were just really feeling like the void of having a lot of love and nowhere for it to go. And my husband felt, he's like, I think this will really help to bring in a new addition to the family even while things are going on and think about welcoming in a new animal friend. And Winnie, our dog is settling in and she also had an eye surgery and her spay surgery, so she's healing and healed now, and we just love her so much.
(36:03):
And we are so dedicated too to making sure that she has a really great life. And that's something that I feel like that we're also both conscious of in terms of resources and why I'm not ready to have a kid tomorrow or something, because I don't want to take away from what we already have together with our family now. And so I think that over time, since my initial diagnosis, I have felt more peace in having family as it is and as it can become even within the confines of some of the constricted or altered choice-making that is a part of our picture because of my cancer diagnosis. I am grateful to be holding all of that together as a way to let go of some of the expectations or griefs that remain and really be open to all the different ways that I can be a part of making other people's lives better.
Nandita Bajaj (37:13):
That is so powerful, so beautifully said, Elena. I mean everything you've said and the candor with which you've said everything and the deep analysis you've done around not just your personal situation, but the situation of all the others around you who are affected by it or who will potentially be affected by it, including potential children if you do bring them into your life. I just find it incredibly inspiring. And yeah, you've just taught me and so many others around you so much about not just thinking analytically about it, but being in the midst of a very difficult situation and still holding that perspective with so much grace and compassion.
Elena (38:00):
You know, I'm just very appreciative of this space you've created in this conversation and in your other episodes to open up these topics. And I think having spaces where talking about ambivalence and talking about intention and different ways of conceptualizing family and care, and I just am so glad to be a part of it and to have the tools from you and from your work to talk more candidly and honestly about the topic. And also I think that thinking about the finiteness of life makes bringing new life into your family and into your day to day experiences take on a new weight, and I am grateful to have that in mind no matter what paths we pursue.
Nandita Bajaj (39:00):
Yes, really well encapsulated. I'm just really, really happy that you decided to share your story with me, bring so many incredible perspectives to the table while remaining the incredible human being that you are. I just wish you so many good wishes as you navigate this path and my very best to you.
Elena (39:23):
Thank you, Nandita.
Nandita Bajaj (39:26):
That's all for today's episode. Thank you so much for listening. What did you think of this episode? Do you have your own story you'd like to share? Check out the show notes to see how you can get in touch with me, whether you'd like to share feedback about the show or a particular episode, or whether you'd like to join me on the show to share your own story. I'd love to hear from you. Thank you so much again for joining me today as we collectively discover and celebrate the many different pathways to fulfillment beyond pronatalism. Beyond Pronatalism is brought to you by Population Balance, the only nonprofit organization advancing ecological and reproductive justice by confronting pronatalism. This podcast is produced in hosted by me, Nandita Bajaj, with the support of my production team, Josh Wild and Alan Ware.