Being on the Other Side: An Oncologist's Perspective on Grieving

Listen to ASCO's Journal of Clinical Oncology essay, "Being on The Other Side; An Oncologist's Perspective on Grieving," by Shannon MacDonald, an Associate Professor at Harvard Medical School and a Radiation Oncologist at the Massachusetts General Hospital & Mass General Brigham. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Shannon MacDonald. MacDonald shares her experience with grief, loss, and love after her husband was diagnosed with a mitochondrial disorder that ultimately took his life. MacDonald explores what grief means and how it can be different from what you originally imagined.

TRANSCRIPT

Narrator: Being on the Other Side: An Oncologist's Perspective on Grieving, by Shannon MacDonald, MD (10.1200/JCO.22.01363) As an oncologist, I had cared for patients facing grave illness and death. I imagined the loss of loved ones and expected grief to be an unbearable sadness, most poignant in the earliest days and lessening with time. I somehow expected that counseling people who grieved would make me more prepared. When my husband Dan died at age 42 years, I realized that I had no idea how grief felt. It was surreal and disorienting, I was displaced from a life that made sense into a new reality, one my mind acknowledged but my heart and soul would not accept. Dan's initial diagnosis offered a glimpse into a different life. It was unsettling but included us both. When we were newly engaged, Dan abruptly lost vision in one eye quickly followed by the other. I vividly remember the dark, neuro-ophthalmologist's office in New York City where I was a resident. I sat next to a young medical student who appeared fascinated as my 31- year-old fiance´—who did not yet appear blind— struggled to count fingers or the big E projected on the wall before us. As unremarkable magnetic resonance imaging, spinal tap, and laboratory results were posted, rare disorders floated into the differential. Dan had a mitochondrial disorder. My fiance´ had transformed into a medical student case study. It is not possible to understand the impact of a life-altering diagnosis until you are on the receiving end. How dramatically life can change in an instant. How painful the guttural yearning to go back in time can be. Dan and I both came from healthy, loving, families and had a close knit and fun group of friends. Dan had an MBA and ran a family company. I was a doctor in training. We lived active, full lives with plans for our future. We had no medical problems, and although aware as an oncologist that a medical diagnosis can derail a healthy young person's life, we or I never thought this could happen to us. In the weeks that followed Dan's diagnosis, his vision deteriorated. We retreated into a world that included just us. We moved our couch just a few inches from our television. I read menus to Dan at restaurants, and he corrected my mispronunciation of ingredients. I took over as our driver despite being a city dweller with little driving experience. We got handicapped plates, a cane, researched seeing eye dogs, and had a conversation that abruptly ended when I uttered the word "Braille." One night when I asked why he could not fall asleep, Dan answered, "I am afraid I won't be able to see your face when I wake tomorrow." We left the lights on and did not sleep that night. Fortunately, Dan's vision loss was not complete and, although painfully slow, he recovered some of his sight. Over time, he reintegrated into his friend circle and work with adaptions and the help of a low vision clinic. We were grateful throughout. Dan was an avid skier and was able to ski again once he realized that muscle memory was more important than vision. With time, he no longer appeared blind. He gained the confidence to return to contact lenses, which allowed him to remove his glasses and sunglasses that hid his eyes. Dan had to face additional challenges. He developed bilateral avascular necrosis of his hips from the single dose of steroids given to him when multiple sclerosis was thought to be his diagnosis. This led to bilateral hip replacements and a year on crutches. This experience taught me to appreciate the subjective nature of function loss: I had perceived vision loss would have the most profound impact on his quality of life, but undergoing hip replacements and loss of mobility were unequivocally worse for Dan. In fact, this triggered such emotional distress that it challenged our relationship more than ever. Anxiety dominated over depression, and rather than medication, Dan used alcohol to soothe his pain. Over time, with therapy and lots of tears, we accepted this life with appreciation for what is truly important and we learned to ignore the trivial. We grew closer than ever, and, for this, I will be forever grateful. I find comfort in the thought that we lived together with more emotion and a deeper passion for each other and for life. Dan died of a sudden cardiac event during a business trip. When his dad called to tell me the news, I was doing yoga, and I recall him asking me "are you sitting down?" So, I kneeled on my yoga mat. I can't recall how many synonyms for death he attempted before he was forced to say the word "dead" to make me understand what had happened. When I got off the phone, I quickly called my sister and bluntly said "Dan is dead" and then repeatedly apologized for not asking her if she was sitting before I told her. I was derailed. I felt utterly unprepared for a life without the man who provided me with guidance, confidence, and experience that I had not had on my own. I never knew what true anxiety was until his death and would never again feel anxious about public speaking after giving his eulogy. I will forever be grateful for the people in my life who sat with me silently, fed me, and even slept in my bed in Dan's place. They would later recall memories in those early disorienting days that I did not. After reading that people often sigh when grieving, I asked my friend Alice if I ever sighed. She looked surprised and responded, "Shannon, you cried softly and sighed all day long." When I was disappointed that I never dreamed that Dan was alive or woke up having forgotten that he was dead, those closest to me said that I would wake in the middle of the night reaching for him, realize he was not there, and then settle back into some sort of sleep. After his funeral, I became obsessed with determining exactly how he died, as if figuring it out could bring him back. The wait for final autopsy results was excruciating, but the findings of a hypertrophic cardiomyopathy likely related to his mitochondrial disorder was utterly unsatisfying. I remained convinced that if I had joined him for that business trip as I had planned to, I would have been with him, and he would still be alive. I still believe this. I also remember telling his father about my feelings of guilt, and he replied with both surprise and relief saying, "I feel so guilty too." For months, I could not think of any future and preferred to live in the past. The sadness of missing him was more comforting than the thought of moving forward in a life that did not include him. Although I never thought of doing any harm to myself, I remember spending an hour convincing a patient to accept treatment for an advanced cancer only to walk out of her hospital room thinking that if I were her right now, I would do nothing and welcome death. With the support of friends, family, and therapy and the passing of time, I slowly became more functional and was able to reintegrate into society. My grief morphed into anxiety and feelings of guilt when my memories of Dan became less vivid as if I was not honoring him enough. When I finally had the courage to pack his clothes to give to charities, I was saddened that it evoked less emotion because they no longer carried his scent. What I had thought of in the past as "moving on" and a healthy step in the grieving process was not a simple forward advance but came with a longing to return to a period of greater grieving. Moving on and making new memories made me feel disloyal, as though I was abandoning him. With time, I came to accept my new life that was so different than the one I had planned. Eventually, I reached that place that Didion described: "I know why we try to keep the dead alive: we try to keep them alive in order to keep them with us. I also know that if we are to live ourselves there comes a point at which we must relinquish the dead, let them go, keep them dead."1 But this took time, support, and a disciplined effort to change myself by reimagining my values and creating a new identity that did not include my husband or the children we planned to have together. My evolution aligned with the teachings of social scientist Boss,2 who refuted the idea of finding closure and instead posited that we must learn to live for a future that contains the loss. I learned over time to accept the discomfort it caused me to speak of him in the past tense. I could be true to myself; my identity was shaped by Dan but not in the present. I learned to say "I" instead of "we." I accepted that my niece and nephews—and all my patients with pediatric cancer—would be the children in my life. I met a man and partner secure enough to be with a woman who speaks about a man she loves that is not him. Grief is personal, and I am only an expert in my personal grief. I found the support from colleagues, family, and friends helped me, but they could not make me feel close to my old normal—only Dan's return could have done that. I learned that some people simply could not acknowledge the loss and that in turn had a profoundly negative effect on our relationship. Even a card or e-mail would have sufficed, but silence created an awkwardness that was hard to bear. I was told by a coworker that a colleague had tried so many times to say something to me but was too afraid that he would say the wrong thing, so he said nothing. Hearing this helped me understand how his silence was not because he did not care but because his fear of hurting me by saying the wrong thing was paralyzing. I also discovered that avoiding conversation that included Dan made Dan feel more dead. I would have preferred to speak of him, even if this made me emotional. I learned to answer the "how are you" question by replying okay, as I could not lie and say "well." When my nephew died, I texted my sister daily "How are you on a scale of 1- 10?" She loved this. People said perhaps well intended but strange things, such as "don't worry. You are young and will marry again." and "you are lucky you did not have children and you will be a mother to somebody else's children." With these comments I heard, "Dan is replaceable" and "it is good thing that you don't have a piece of him in a child you shared." I recognized that I sometimes needed more space and that loneliness can feel unbearable. I had no way of predicting my needs, which made it difficult to plan ahead. I found it took years to work through my emotional pain and am forever grateful to those who believed in my ability to heal myself. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows including this one at podcast.asco.org. I'm your host, Dr. Lidia Shapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University. Today, we are joined by Dr. Shannon McDonald who's an associate professor at Harvard Medical School and a radiation oncologist at the Massachusetts General Hospital, and Mass General Brigham in Boston. In this episode, we will be discussing her Art of Oncology article; "Being On The Other Side: An Oncologist Perspective On Grieving". At the time of this recording, our guest has no disclosures. Shannon, welcome to our podcast and thank you for joining us. Dr. Shannon MacDonald: Lidia, thank you so much for having me. It's a pleasure and privilege to be here today. Dr. Lidia Schapira: I'd love to start by having you tell us a little bit about what motivated you to write this essay that is so personal and so important, and to share it with the large community of oncologists. Dr. Shannon MacDonald: So, writing it was easy. I found it very cathartic to write about my experience. So, the act of writing it, I did over many years.

I started it soon after Dan died, picked it up a couple of years later, and then put it away for a long time, and recently was motivated to pick it up and start writing again based on reading "Beautiful Boy", which was one of the Art of Oncology pieces and also, based on another medical narrative that I wrote just before this one.

And the decision to publish it and make it public was a little more challenging. Dan was a very private person. We spent many years being very private about his medical problems. He never wanted to be seen as having a disability or a medical issue. I think he was wise enough to know he'd be perceived differently, but I made a decision when I gave his eulogy to share some of his medical history and how brave I think he was during that time. And I think one of the reasons to publish it was to help others. I found reading very helpful when I went through this experience and I think helpful in my career as an oncologist, and reading people's stories, short stories, books, any type of reading about the human experience is helpful to try sort of put yourself in those shoes and try to understand what it feels like. And I was also motivated by giving a few talks or joining others to give talks on grief during the pandemic and speaking about my experience and was told by colleagues a long time ago,' we just want to know how it feels'. And when I gave these talks, I think residents in particular, but also, colleagues of any age were very grateful for the sharing of my experience. And it made me feel sharing this was meaningful. Dr. Lidia Schapira: And when you talk about how it feels, the sentiment I took away from reading the essay, and I've read it many times, is how raw that felt. And your wisdom in saying that you had lived as a professional in a culture that's immersed in grief, and you were exposed to suffering, and the suffering of children even, every day in your professional life, and yet you were unprepared. Can you talk a little bit about what you felt helped you to learn to accept and move on or live with Dan's absence? Dr. Shannon MacDonald: Yeah, so I think what you said about being totally unprepared and what I said in my essay was completely true. I guess, I thought somehow that seeing patients suffer, seeing them lose loved ones, seeing parents lose children would have somehow made me more prepared, but it did not at all, I was completely caught off-guard. And I remember calling a colleague who was also 40 and she lost her husband suddenly, about three months after I lost Dan. And one of the first things she cried out when I called her is, "I can't believe I had no idea what this felt like." And I think that that resonated with me, I felt exactly the same way, and that's what I answered back to her. And as much as we live it and see it every day, it's so different being on the other side of it. I think we see the illness, the sadness, and you think of it for moments. You can't think of it every moment of every day. And I remember hearing people say that person that I lost is in my mind every moment of every day, and I couldn't understand that, but it's true. Somehow, it's constantly there. Even though Dan was gone, he was constantly there, and to do anything meant sort of pushing him out of my mind in order to do another task. And that part is the part that I think is unimaginable. And why would you want to imagine that, and how could anyone? And that is the part that we don't see. And I think as oncologists, we see our patients through a tremendous amount of suffering. We see them at the time of death of a loved one, and then we see them shortly after, but we don't always see them in the weeks, months, years after that loss. So, it was that part that was so unknown to me until that happened. And I think you do what you can to get through it. It's not easy, it's messy, and it's hard. And I can't say that I could give someone advice on how to get through it in a better way. I think you just have to go through it. And that was yeah, the experience I learned from my loss. Dr. Lidia Schapira: So, you say that it's messy and complicated, and in your essay, you reflect also on the reaction that you had or the way that your colleagues responded to this catastrophe that took you by surprise. It was not as if Dan had a chronic illness and was approaching the end, this was totally unexpected despite the fact that he did have an illness. And you talk about the silence of your colleagues as a wound. At least that's the way I interpret it. Can you talk a little bit about that? Dr. Shannon MacDonald: Yeah, and it's silence of colleagues and also friends. But I think for me anyway, I can only speak about my personal experience — that was the hardest because it created this awkwardness that was hard to get past. So, in my opinion, it's better to say anything or write something if you can't say something. But also, I also have learned, and I understand that it's just so hard and people are so afraid of saying the wrong thing that it's natural to avoid it or to try to say something, and then be too nervous to say something.

But I guess, my advice would be to try to write or say something rather than saying nothing because it's so awkward when nothing is said, and it creates an additional stress on that person that's grieving, and sometimes, a sad loss of a relationship for a time or forever. Dr. Lidia Schapira: Sounds like you have used your experience to now, talk about and write about your personal grief, and you're seen perhaps, as a resource for others or a teacher. What does that feel like? Dr. Shannon MacDonald: It feels good. I'd like to be that as much as I can be. Again, it's only my personal experience. I've received feedback that it's helpful, but I'm sure I wouldn't receive feedback that it was unhelpful or negative feedback.

But I think that makes me feel like there's some meaning to the writing and the work that I've done, in speaking to others. And I think there's a lot of oncologists, maybe particularly those new to training that are eager for more teaching in the human experience of what we see every day. They certainly want to learn the trade and the skills, and they can find that in textbooks and in our teaching, but the humanistic part of it is more difficult to learn. So, it's been very rewarding to have colleagues and residents tell me that it felt great to be able to ask in a comfortable setting how it feels to have someone die, so that they can understand better how their patients feel. Dr. Lidia Schapira: Can you reflect a little and share with us some of the sort of milestones in your sort of recalibrating and being able to find joy, and then find a relationship and transform your experience into part of who you are and carry with you, but in a way sort of embrace this new place in your life? Dr. Shannon MacDonald: So, I'd say a lot of steps forward and steps back. And if anyone had told me I would be as happy as I am again, now, right after Dan died or within the first year after he died, I would've said no way, that's never going to happen. I'd say in the initial time of his death and months after his death, I had no desire to ever date or be with anyone again. As I mentioned in my essay, it was easier to live in the past than to think about the present in an identity that was no longer what I knew was my identity or the future, was daunting. And I would say, again, time is different for everyone, but maybe after 10 or 11 months, I could be happy again. I could enjoy friends, I thought I was ready to date. And one of my best friends said, "I don't think you are." And I said, "I think I am." And then I wore my wedding ring on the first date I was set up on. And I thought maybe foolishly, "Oh, I don't think he noticed or he cared. He knew I was widowed" and he did. And we didn't go out on another date. But in time, I learned to date other people and not feel guilty about it or disloyal to Dan. As I mentioned, I met someone who allowed me to speak of him, which was very important for me that I not lose that past part of my life, and that person could still come forward into new relationships and new friends and family. I still am very close to my in-laws and keep them as part of my family. And I think that keeping my old identity and what Dan did for me and how he shaped me was very important to me in moving forward. And I feel that I'm able to do that now, and know that he lives on in the person he made me, and the other people that he shaped in his life that was too short. Dr. Lidia Schapira: So, the question I'm sure on our listeners' minds is how has that impacted you in your professional life as a radiation oncologist? Dr. Shannon MacDonald: It allows me to be probably more empathetic rather than sympathetic. I remember being taught in medical school, in my psychology rotation that you can only truly be empathetic if you've been through something. And it's still similar, everyone's experience is different. But for some patients, I think it allows a little more empathy. I think in the initial months, years after Dan died, I was too empathetic. I was too sensitive to the losses that other people experienced. And that made me realize that somehow, maybe I built up some desensitization over time that was very subtle. And after Dan died, I worked hard to build that up again to allow me to work with patients and not be too sad and too empathetic, or too upset by what was happening to them. And I do think that that has happened again, but it's beautiful to be able to empathize, but hard to empathize too much. Dr. Lidia Schapira: So, in the last few minutes, Shannon, I'd love to hear your take on the value of narratives, of stories to bring these topics to our discussions in the clinic, to the curriculum of our trainees, and I think create a community of people who really deeply care about our lived experiences and want to support each other. Dr. Shannon MacDonald: So, I think they're extremely important. I love the narratives. I always look at Art of Oncology and I love the New England Journal of Medicine 'Perspective', and JAMA's 'Piece of My Mind '. And I also found books; Joan Didion's, The Year of Magical Thinking, and also, those stories by Emily Rapp Black, The Still Point in the Turning World; When Breath Becomes Air by Paul Kalanithi. I think those are three books that I tell my residents to read and narratives, I think we need more of that in the curriculum for our residents and students. And I do feel like there's a generation that is craving that more. I don't know if you've seen this in the residents you mentor, but, in ours, I feel that they're asking more and more for that to be part of their curriculum more so than they had a decade ago. And it may be that this generation is just more comfortable speaking about feelings and acknowledging that that's an important part of medicine. And we want to cure patients. We want to help them live with their cancers for a long time with a good quality of life, and we aim to do that. But the reason we aim to do it is so they can have a human experience. So, that part is so important. It's why we do what we do. And I think that it motivates us to take care of our patients and help them to live as well as they can with their disease. Dr. Lidia Schapira: And we become part of their stories too. I've often thought that in some ways, if we have a strong relationship with patients, we are invited to co-edit those illness narratives, and what a privilege that is. Dr. Shannon MacDonald: I agree. Dr. Lidia Schapira: My last question is; what are you reading now? Dr. Shannon MacDonald: So, what I would recommend that I've recently read for the Art of Oncology listeners would be Between Two Kingdoms by Suleika Jaouad. I love that book. It's also a great audio book. She narrates it herself and does a beautiful job with that. I also recently, probably a year ago now, read Sanctuary by Emily Rapp Black, which I thought was very meaningful as well. So, for your readership, those are two books I would recommend. Dr. Lidia Schapira: Well, Shannon, thank you for an extraordinary essay, for the power of your conversation. And for our listeners, until the next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or a review wherever you listen. Be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology that is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org.

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Additional Reading: My Beautiful Boy

Bio: Dr. MacDonald who is an Associate Professor at Harvard Medica School and a Radiation Oncologist at the Massachusetts General Hospital & Mass General Brigham in Boston.