By Rochelle Broder-Singer
It’s been nearly a year since my lumpectomy for stage 1A breast cancer, and one of my physicians asked me to summarize my health last year and to set goals for this year. I told him that 2024 was a fantastic year for my health: I had my cancer removed, with clean margins and no complications, no serious side effects from radiation treatment, no need for chemotherapy, and clear six-months-post-surgery mammogram and ultrasound.
I’m not saying it was easy. My mom died of ovarian cancer just weeks before my breast cancer diagnosis, and one of my dogs had to be put to sleep around that same time. But I feel like I mostly handled it with aplomb. I am profoundly grateful for my journey and consider myself to have been fortunate at every turn.
Emotionally brittle
Yet, I feel like I’ve used up my emotional resilience – that I’m brittle and stretched, more likely to snap or break rather than sway with the winds of life. There’s lots of grief: for my mom and my dog, and for what I can only describe as a loss of “healthiness innocence” that accompanies a potentially life-threatening diagnosis.
I don’t have a “new lease on life,” a new outlook or a new purpose. I’ve made no major life changes other than paying even closer attention to healthy eating and exercise. I feel an awkward survivor’s guilt that I am a “lucky one” whose cancer was caught small and early and who had a relatively easy path through treatment. Shouldn’t I have something profound to share with the world from this experience?
To help me make sense of my feelings, I spoke with Wendy Lichtenthal, Ph.D., founding director of the Center for the Advancement of Bereavement Care at Sylvester Comprehensive Cancer Center, part of UHealth – the University of Miami Health System. Her work focuses on how people find meaning throughout their cancer journey and on teaching people how to understand and deal with grief. She assured me that everything I’m feeling is normal, natural and even healthy. In fact, at the completion of treatment, many cancer survivors experience an increase in stress and distress, and this can even interfere with daily functioning.
Survivors’ Guilt
Dr. Lichtenthal, who is also a professor of public health sciences at the Miller School of Medicine, helped me understand my feelings of guilt: “If you feel like you’re being called to do something with your existence, and you’re not listening to that call, you might feel what we refer to as existential guilt,” she explained. “This is the sometimes uncomfortable feeling that emerges when we don’t feel we are living as fully or authentically as we can be. And when we survive something life-threatening, knowing others do not always have the same outcome, that can lead to a sense of survivors’ guilt.”
Dr. Lichtenthal then told me something that surprised me: “That survivors’ guilt you’re feeling is a byproduct of the meaning you made of what happened to you. You presented your journey to me as easy, as the best-case scenario – you made that meaning.” I was immediately comforted by the idea that the things I’m feeling are a way of making meaning of my experience. Meaning-making, I gathered, isn’t always a conscious process.
I don’t remember, at any point, consciously deciding that my experience was the best-case scenario for an invasive cancer diagnosis. I’m not sure that I had any handle, through the first six months at least, on what I was feeling. And I think my ability to shape my feelings, even if I did understand them, was very minimal.
Yet, Dr. Lichtenthal noted, I have more agency than I may realize. “You were able to choose to look at your experience from the lens of how others had it harder, rather than focusing on how frightening the experience was or all of the other things you have gone through, all the losses you experienced. That was a choice you made in how to view the situation,” she said. “You could have easily focused on all that was hard about your circumstances. But now, it sounds like you are focused on the fact that you are here, you are intact, and so now what?” She suggested that, although survivor’s guilt is painful, I might look at my own feelings as an awareness that I am alive and that my mind is calling me to live authentically and meaningfully. “But there is no playbook for that,” she acknowledged. “The journey to find what that means for each person can be a very uncomfortable one.”
Here’s where I confess that I felt like I was living authentically and meaningfully before my cancer diagnosis and even before my mom’s death. Maybe what that means to me has changed. Maybe I was only partway there before. I don’t know yet what my mind is calling me to. And now I understand that I don’t have to know. Perhaps I’m still on my way to experiencing something profound in this part of my survivorship journey. That is, weirdly, a relief.
Meaning-Making: Assimilation and Accommodation
Dr. Lichtenthal also observed that I’m naturally optimistic, with a positive outlook on life, and this likely explains why I’m not feeling profoundly changed by my cancer journey.
She explained that clinicians and researchers talk about two ways our beliefs can be processed in response to a major life event: assimilation or accommodation. If a person’s existing views about the world and themselves have a place for the event, and if they can fit the event into their existing belief framework, this is assimilation. If the event doesn’t seem to fit, the person may end up changing their belief system, and this is accommodation. My worldview allowed for bad things to happen without me feeling like it was personal or that the world had forever become dangerous. So, I assimilated both my mom’s death and my own cancer diagnosis.
Adopting Helpful Meanings
So, if my brain’s wiring allowed me to assimilate these events, why am I so emotionally brittle now? I feel like I’ve exhausted my ability to cope with setbacks. I stayed calm and kept moving forward when I was diagnosed with cancer, but – to give one trivial example – I was paralyzed when my refrigerator broke a few weeks ago.
The first thing Dr. Lichtenthal said about how I feel now was simply, “This is complicated.” She reminded me that I’m on tamoxifen, which can affect emotions in often-unpredictable ways. I then confessed to her that I think maybe I’m feeling exactly how I should feel – emotionally raw after dealing with death and cancer and, yes, even the side effects of tamoxifen. Maybe I just haven’t been able to fully process my feelings from everything, and now I’m working through it.
That, Dr. Lichtenthal responded, is a helpful meaning (clinically known as adaptative meaning) – one that sits well, leaves me feeling better and helps me function. “The meaning we make of what we’re feeling affects our experience,” she said. She also pointed out that “we don’t have to believe our meanings with 100% conviction – we just have to use them for the moment. We have the capacity to choose a helpful meaning – again and again. It’s powerful.”
Rebuilding my Reserves
Okay, I wondered – how do I use this understanding of survivor’s guilt and helpful meaning-making to build up my emotional reserves?
Dr. Lichtenthal noted that everyone needs something different and that my path needs to differ from that of someone in acute distress. Making sense of one’s feelings, experience and very existence can be exhausting, she added, and not everyone is ready or able to do that. We both agreed that I’m ready and able, but I don’t quite know how.
She suggested tapping into parts of myself that invigorate me, and I’m still figuring out what those are. “It’s a process – it’s not like you wake up and you’re like, this is how I’m going to cope with it,” Dr. Lichtenthal said.
That’s when something clicked in my brain: I am in this process! Interviewing her, writing this column and previous columns for Sylvester, talking to people about my cancer journey – are all ways of figuring out what invigorates me and how I can tap into it. It’s okay if I don’t feel profoundly changed or feel moved to make profound life changes. I’m just grateful (yes, back to that again) that I’m in a pretty good place, continuing my journey forward.
Read more on Sylvester’s InventUM Blog.
