The Boy I Never Knew
A doctor is moved by a speech given by a past patient’s son.
Read the related article The Boy I Never Knew by Richard M. Boulay on JCO.org.
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"The Boy I Never Knew." At the invitation of a former patient, Vivian, and her 15-year-old son, Joshua, I attended my first patient-sponsored medical conference. The clinking of coffee cups quieted as Joshua began the first lecture of the day. He took the podium with poise and addressed the assembled 300 cancer survivors, physicians, and researchers.
It all began when my parents were not able to get pregnant for years. Finally, they decided to see a fertility specialist. But an unknown mass was found. Surprised and shocked, they waited a month to see if the tumor would go away on its own. It didn't, and surgery was recommended immediately.
To make matters worse, they required my mom to take a pregnancy test before surgery. She was pretty angry about that one. Years of not being able to get pregnant, and they wanted to confirm that one more time. Yep, mass confusion.
The words, you're pregnant, came next. My mom was informed that the baby would have to be aborted so surgery could occur to remove the mass. The only other option was to wait until four months gestation. I didn't even know what the word "gestation" was until a few weeks ago.
Although this narrative was familiar to me, the youthful narrator was not. Joshua's words immediately catapulted me back to 2002, a time when he was little more than a zygote. His mom, Vivian, was simultaneously diagnosed with an ovarian mass and a pregnancy by her local obstetrician. Although he recommended termination of the pregnancy and immediate surgery, she delayed treatment for two months because of her strong desire for pregnancy and her low risk of ovarian cancer.
At 16 weeks gestation, the pregnancy had progressed as expected. Unfortunately, the mass also grew. Vivian, now consenting to surgery, negotiated the goals of the procedure with her obstetrician. Remove only the affected ovary while maintaining the pregnancy. Perform no surgical staging that may risk the developing fetus.
The procedure went according to plan. However, Vivian was diagnosed with a ruptured and unstaged clear cell carcinoma of the ovary. It was then that I first met Vivian, who, quite frankly, rocked my world.
Early in my career, I squirmed as she pushed the boundaries of medical standards of care, elevated the role of patient autonomy, and confronted long-held beliefs that acuity and timeliness of cancer care trumped all else. Yet her decisions then led directly to this moment. Had she succumbed to conventional wisdom, I might never have known Joshua's eloquence.
As her gynecologic oncologist, at our first consultation, I discussed the changing conventional guidelines and the difficulties of maintaining a healthy pregnancy while treating ovarian cancer. Although terminating the pregnancy was still an option, it was no longer required.
I recommended a modified surgical staging to identify microscopic metastases. Chemotherapy should follow. We could make attempts to preserve the fetus. But they would come secondary to the needs of the mother.
My dispassionate assessment ran headlong into Vivian's fresh perspective of a mom to be, balancing treatment-related risks for both herself and her unborn child. My data-driven treatment plan, bolstered by years of conventional wisdom, presumed that dead women gestated poorly. Yet it crumbled at Vivian's insistence of advocating for the dyad.
So I reviewed the sparse data sets informing the conventional wisdom. I telephoned experts, whose opinions were softened compared with the rigid language of my texts. Even though I was less assured, I still recommended a modified surgical staging. Chemotherapy could then be given. But long-term effects of fetal taxane exposure were unknown. Alternatively, delaying surgery and chemotherapy until a planned early delivery was a possibility, although a very real risk of progression existed.
Vivian unhesitatingly and wholeheartedly took on the risks of a delayed treatment. More importantly for me as her physician, she took these risks knowingly. She fully understood her decision may result in death. But for her, the decision was about preserving life.
Again we waited. The pregnancy progressed normally. Magnetic resonance imaging and tumor markers revealed no cancer. And while getting ready for a New Year's Eve party, I received a call regarding Vivian's onset of labor at 34 weeks.
Childbirth is, among other things, inconvenient. The obstetrical team delivered the neonate. I performed the modified stay during surgery. A stay in the Neonatal Intensive Care Unit, NICU, for the newborn and chemotherapy for the mother followed. Mother and son both suffered but, clinging to one another, survived, recovered, and ultimately thrived.
Joshua continued. Surgery occurred at four months. The fetus survived. The mass exploded upon removal. My mom was diagnosed with clear cell epithelial ovarian cancer at the age of 30, and she was pregnant with me.
Treatment was required. She opted to wait until after delivery. So I was five weeks early. But I got out just in time to be a tax break. I guess that was the first gift I gave to my mom.
On New Year's Eve 2002, I decided to make my entrance-- again, not planned, but why start now? Nothing about me was planned. My mom underwent more surgery in staging that night. I, too, was a bit problematic, with lung deficits.
Needless to say, my mom and I had an extended stay in the hospital. My mom began treatment when I was able to behave, breathe on my own. Once I was released from the NICU after almost a month, I stayed by her side during multiple rounds of chemotherapy. I hear I was the life of the party in there. What a beautiful place to end a story-- a grateful mom, a happy baby, and a relieved physician.
But 15 years later, a boy approaches a podium with a PS, adding a facet to this story that I had never previously considered. This positive "pregnancy test cum zygote cum fetus cum neonate cum baby" became Joshua. And until now, he had existed in my mind as no more than a decision point in an algorithm, as one of two rapidly growing cellular masses within his mother's true pelvis, one desired and the other not, competing for space and blood supply.
His mere presence so confounded my cancer treatment plan that I discussed trading his existence for a better chance of preserving hers. After all, Vivian was the patient. But with some literature available to support her decision to maintain her pregnancy, I was comfortable proceeding with the pregnancy in situ.
However, when she rejected the recommended surgery and chemotherapy, opting to wait until delivery, I felt adrift in doubt, fearing the consequences of inaction. It was not until this moment that the impact of Vivian's decisions made 15 years ago began to settle upon me then threw me, gently at first like a whisper, which in time demanded to be heard. My decision tree, scientific and statistical, balancing risks and benefits for Vivian, suddenly became both equally burdened and enlightened by the young man addressing this crowd.
I had never until this day considered his thoughts and opinions on the life his mother so selflessly gave him. In fact, I had never considered his life at all. At that time to me, Joshua was a fetus, a potential life. Today, he stands before me, powerfully realizing the beginning of that potential.
Joshua closed. Here's what I do remember. Through probably some of life's most difficult moments, our bond never broke. Don't get me wrong. I test her at times. I mean, I am 15. But I am the person I am today because of her. While she has taught me many lessons, I want to close with three I ask you to remember.
One, never say, I can't. Do you know what happens when you say, I can't, in my house? It isn't pretty. It's worse than the cancer card. It's the scar. Yep, shirt up, scar exposed.
The words, did I ever say I can't have a baby in cancer, pour from her mouth. Everyone in my house knows. They can, or they will die trying. Never say, I can't.
Two, include us. We already know when something is wrong. You are not protecting us by your silence. Talk to us. Tell us your fears. And let us know how we can help.
There are some days I wish my mom wasn't so honest. But in the end, not knowing would be so much worse. While difficult and at times a bit traumatizing, I wouldn't have preferred it any differently. It has helped create and shape the person I am today.
Three, connect. Connection is key, my mom tells me. I tell her not to worry. I am well connected. Feel free to add me on Snapchat or Instagram. I have experienced it firsthand. The more awareness, the more lives saved. The more lives saved, the more moms that are able to raise us. It is now my honor to introduce to you my mom.
Joshua looked up as his last words faded into a standing ovation. And though he spoke to the collective experience of the hundreds present, I couldn't help but sense a personal connection to the boy I never knew, a boy whose confident, assured narrative contrasted with my own recollections of the indecisiveness and doubt, a boy whose mother's desired treatment plan, although it was different from prevailing medical wisdom, proved equally legitimate.
The son of patient autonomy addressed me today. The youth born of selflessness challenged me today. The young man embodying a mother's courage moved me today.
[MUSIC PLAYING]
I'm Lidia Schapira, editorial consultant for the Journal of Clinical Oncology's Art of Oncology. I would like to welcome you to Cancer Stories. I'm the host of this podcast.
And with me today is Dr. Rich Boulay, director of cancer survivorship at St. Luke's University Health Network in Bethlehem, Pennsylvania. Dr. Boulay is the author of "The Boy I Never Knew," published in the January issue of JCO. Rich, welcome to our program.
Thank you, Lidia, for having me. I'm looking forward to this talk.
Oh, so am I. I know you've contributed to Art of Oncology several times. So before I ask why you write, let me ask you, what do you read? What is on your night table right now?
I actually just picked up The Bright Hour, which is a cancer narrative of a young woman who is actually succumbing to her disease. And I find cancer narratives incredibly powerful. When Breath Becomes Air is probably one of my favorites that I've ever read of all genres.
So I tend to read a lot of those. And when they're not on my nightstand, they're on my phone. So I tend to look a lot through Twitter and find patient narratives because I find them incredibly powerful and transforming pieces of literature.
And in what way would you say they are powerful or helpful to you? Do they help you process your experiences? Do they expand the way you think about it? You're so clever with words. I'm sure you can help put this into, perhaps, a sentence that people can understand.
What I find powerful about them is that they are unique, personal, and they each have a different facet and a different way of understanding communally what we think of as cancer survivorship. So it's not so much adding to the breadth. It's adding to the depth of that experience.
And when someone has been through something personally, speaking to that in a beautiful way-- for instance, Susan Gubar's Living With Cancer blog in The New York Times is a beautiful example of an intricate and exacting narrative using beautiful language and discussing very common experiences that cancer patients and survivors have in a very, very beautiful way. So that's what they mean to me.
You have written that this is deeply personal and that you accompanied your wife through a cancer diagnosis. Can you share with us a little bit about that in terms of your professional life and your motivation to share these stories?
Yeah. I think that's where the idea came that the expert, in my mind, is the patient. So we are trained to be the experts. We are trained to know the literature and to know the next medical step in treating someone's diagnosis and in treating their person as well. Until you are right there in the swirl of the storm, though, it is a completely different beast.
And I will tell you what I relied on when my work was initially diagnosed with leukemia, which is about 10 years ago-- and she's still doing fine-- was my patients. Their day-to-day information on how to cope with the myriad of experiences that come up-- you know, what do you say to someone who says something totally off the wall and dumb?
When they start telling that story and it ends with, oh yeah, and that person died of the same disease you have, how do you manage those daily insults? And how do you get the information across? And how do you get food for your kids to eat? It's just that daily processing of a new cancer diagnosis and how it touches everything.
I always say they were my saviors. And they got me and my family through all of this. And it was completely different as an experience from what I learned through my fellowship and my residency and my textbooks and my readings.
I learned how to treat a disease. I really didn't know how to treat a person because I didn't understand what they were going through. And again, this is second hand. I wasn't even the one with the diagnosis. So that experience has really transformed me and really want me-- it's really pushed me in places where I never expected to go.
In telling these stories as clinicians, we are in the center of powerful, powerful experiences where we can learn from them that challenge our own selves and our own values. And this story did for me. And then to be in a place where people may want to hear that is really fascinating. And being able to have that experience of learning and thoughtfully processing and then being able to pass that along is really valuable.
And I wish more physicians would write or speak and share these experiences in ways that people can benefit from them because we have a wealth of other experiences besides simply clinical research or bench research and publishing that and speaking to each other. Just having the privilege of being in someone's life as they go through the most difficult days and what we learn and take home from that is very powerful and very valuable. So I wish that would be shared more from our point of view.
Thank you for that wonderful reflection. That was so deep. When I look at your work, the essays you've published over the years, the theme that emerges for me is that of connection and the importance of connection-- connection for support, connection to personal growth, and perhaps even listening to you now, how that really helps us develop our empathy for our patients and our compassion. Can you speak to that a little bit and how you have dealt with that in your essays?
Yeah, that's actually a beautiful understanding of me. And we've only met in the hallway at ASCO a couple of times. But you are absolutely right. For me, that goes way back.
So as a kid, my first experience with cancer was that of my grandmother's. She was diagnosed with a colon cancer. She was diagnosed with late-stage disease.
But surprisingly, she lived another five years. And that was back in the '80s, before we had a number of the drugs that are available now, as well as a number of the drugs to combat the toxicities. So although she lived, her quality of life wasn't great.
But what I felt at that time was a great conspiracy of silence and that as a grandchild deeply in love with his grandmother-- I mean, she was just the-- we just had an incredible connection. But not being able to understand or process or even have the language to think about her disease and how it affected those of us around her was more bewildering than anything.
So it kind of left-- we all go through difficult parts in our life. And we all try to grow from them. But I didn't feel that there was much growth. I felt like my grandma got sick, and I lost her.
When I became a clinician, the same conspiracy of silence existed. And we've all seen it. We'll have the family member who asks us to speak out in the hall because they don't want to speak in front of the patient and ruin this tactful little lie that may be going on where people are hiding truths from each other.
We don't have the right language. We don't share honestly the experiences. We try to either prop them up and make them either more joyful or more sorrowful. We just don't have a way of honest transmission of knowledge between each other.
So for me, that personal connection is what is going to further our understanding of how people process this disease and how people learn to live with it. We've done great at improving-- as physicians, we have the language for this. But the improvement of death of 27% over the past 25 years or so is wonderful. But we need to start talking about how to improve life, too.
And I think having open, honest dialogues and connections with those that go through this is the only way to do that. And encouraging patients to speak their truths. And encouraging patients and their families to speak the same language. And trying to give them the right words to use, even to help to convey some of the parts of the experience that they just don't know how to speak about.
So yeah, it's, for me, all about that relationship. And that's why I do what I do. The privilege to take care of patients in their most difficult hours and be some sort of support, both medically and socially, I hope, is incredible.
And what I get from that is everything that they think I give them, I get twice as much. It's just an incredibly powerful learning and therapeutic relationship. And I wouldn't trade it for anything.
So I hear your incredible enthusiasm and passion. And you are in such a great place to develop programs for cancer survivors because I think you completely get their point of view and value their perspective. And you've walked in their shoes.
Let me ask you a little bit. As a surgeon, since you're trained in gynecologic oncology, you also have this incredible opportunity to form relationships with patients and see them through the entire illness. Tell us a little bit about Vivian and Joshua.
Vivian is the protagonist of the story you just wrote, "The Boy I Never Knew," and Joshua. And you write about this very moving meeting with her son 15 years after you took care of Vivian in crisis, really. So in the remaining minutes, can you tell us a little bit about the essay and what drove you to write it and the message you want to make sure your readers take from this essay?
Yeah. Well, first of all, I want to thank you for helping edit it because this was a challenging one for me to write. I wrote from two separate points of view within the same narrative. And it tended to get a little boxy and confusing.
So thank you and your editorial staff for helping me through that quagmire at times. I just reread it today, and it says exactly what I wanted it to say. But the first time, it didn't. So thanks.
This was a true chance for reflection in a way that I had never expected. So it totally caught me off guard, was the first thing. So I get invited to a patient-sponsored conference. So there are docs and patients. But it's primarily-- it's not a medical conference, although it is a medical conference. But its focus is on patients.
And the very first speaker of the day is this young boy who I'll call Joshua. He is 15. And he is telling his mother's story. And his mother, Vivian, was a patient of mine while she was pregnant with him. And the story reflects back and forth between his point of view and my point of view.
And the three points that I wanted to get from those two narratives back and forth is-- the first one is that as physicians, our medical decision making can really be hamstrung by an overreliance on evidence-based medicine. We've taken an oath to do the right thing. First do no harm.
We try to do the right thing for everyone. And we look for all the resources we can to do that. But those resources aren't always accurate. And the resources are changing over time.
And our language even as we discuss these things together-- so when I'm trying to figure out a treatment plan for someone and the literature isn't clear, you call the experts in the field. And then you find that their language is a little bit flexible, too. So what you thought was a firm treatment plan is not. So that was the first thing I wanted to convey.
And in the language between Joshua, who is very matter of fact about, we did this, and we did this, and we did this-- and then my reflection was, ugh. This was early in my career. And I was flying by the seat of my pants. And every one sentence he said was like two weeks of my life trying to figure out the right thing to do.
The second point that I wanted to bring out-- and this was really when I had to tell myself to breathe during his talk. It was literally that overwhelming for me-- is that we as physicians and our medical license really conveys an incredible amount of power, and much more power than I had realized. We use our superpowers for good. We get people through the ICU. We get them through the OR, that sort of thing.
But this was a time when the power and the recommendations that I was giving a young mom with a newly diagnosed pregnancy-- and one that she had tried for years and really was invested in this pregnancy, more so than I can even convey, but not that I really understood at the time-- was that everything that I was asking this woman to do either had potential harm or could result in pregnancy loss. In fact, her prior doctor did tell her that she needed to have a pregnancy termination.
So that whole power that we wield may have-- if I got my way, this whole meeting may not have happened. Or it may not have had the same intensity and power that it did for me.
And I was just grateful that I listened to the patient and this point of view, which brings us to the last point that I really wanted to make-- was that patient autonomy really needs to be respected in a therapeutic doctor-patient alliance. We call it a relationship. But really, we are trying to work together for the greater good.
And there are times, such as this one, when we may disagree. That doesn't let us off the hook. As clinicians and physicians who are trying to get the best for our patients, our values may differ from theirs. And then when you add the conspiracy of evidence-based medicine on top of it, which should inform our decision making but may hinder it, then we're sometimes at odds with what evidence-based medicine is telling us and what our patients desire.
And in this case, the informed decision that when it was right at the end of it-- and again, it doesn't always work this way-- was that in the absence of strong evidence-based medicine, I took the patient's route and willingly but difficultly walked that path with her. And it's made all the difference.
It really has taught me that an informed patient who is making a different decision from you-- neither of you are wrong. You just have to respect their values and what they bring to the doctor-patient relationship. So those were the three points for me that I was trying to get across-- patient autonomy, the power that we wield as physicians, and that medical decision making needs to be more than just evidence-based medicine.
Beautifully stated. And you wrote in there that you shared this essay with Vivian. Did I read that correctly?
I did. I did.
And what was her response?
She was about as overwhelmed by this as I was. She was thrilled that her story was now informing both young physicians and seasoned ones through the Journal of Clinical Oncology and that their story could help to show the power of patient autonomy.
She herself has become a very strong advocate and is on a board of a major ovarian cancer network for patient advocacy in addition to being a competent PhD in clinical psychology. So this is a very accomplished, smart, savvy woman who is pleased to have the podium to speak and be heard in ways that she's been trying to for the majority of her life. And I'm just grateful to be part of it.
I can't tell you the power of the speech. Here's this 15-year-old kid who steps into a podium. It's a big room of 300 people. I can't imagine doing what he did. But I literally had to tell myself to breathe a couple of times. He was so powerful in narrating this story. So I think they are both grateful to have this come out and to have their experiences inform others.
Well, thank you Rich. The essay is very moving. And your empathy and compassion and curiosity comes across so loudly and clearly.
So thank you Vivian, Josh, and Rich. And thank you for participating and talking with me this morning. That was Rich Boulay, talking about his essay "The Boy I Never Knew." Join me next time for a conversation about the art of oncology.