Love in the Time of Cancer
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A doctor\\u2019s perspective on how love can affect decision making.
Read the related article\\xa0"Love in the Time of Cancer"\\xa0by Lawrence Einhorn on JCO.org.
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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. Guests on this podcast express their own opinions, experiences, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as a ASCO endorsement.
Cancer Stories, the Art of Oncology podcast present Alina Cho reading the essay "Love in the Time of Cancer" by Lawrence Einhorn, published October 20, 2017.
"As a clinical oncologist for over 40 years, I have often wondered about the factors that drive patients to battle seemingly insurmountable odds with hope and determination. After all these years, I turn to love in all its many forms as a compelling force helping our patients combat the uncertainties associated with a cancer diagnosis. Love cannot conquer all. That we know only too well. But it can provide comfort in troubling and unpredictable times. And propel our patients ever forward against a terrible disease they face.
The Maudlin sentimentality of some works of fiction pales in comparison with the courage and resilience that characterize our patients. As I move toward the end of my career, I more fully realize that it is love that lies behind the resilience of so many of our patients. Much like Nobel laureate Gabriel Garcia Marquez described in his novel, Love In The Time Of Cholera, in which he demonstrated the power of devotion and enduring love during difficult times over a lifetime of his protagonist.
Illness as Metaphor was a concept espoused in a series of essays by Susan Sontag. A paragraph from her work is very moving to me. Illness is the night side of life. A more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and the kingdom of the sick. Although we prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
It is difficult to navigate that night journey as a single passenger. Love, in its many manifestations, helps provide solace and a sense of peace. Not just for patients, but also family members. We bear daily witness as oncologists to the power of love in the time of cancer.
WG was 23 years old when he was diagnosed with metastatic testis cancer. After complaining of pain in his left testis, his wife insisted he seek medical care. But by the time of the diagnosis, his disease had spread to the retroperitoneal nodes. He was treated with bleomycin, etoposide, and cisplatin. And achieved a serological complete remission. A post chemotherapy retroperitoneal lymph node dissection revealed teratoma.
His tolerance of chemotherapy and surgery was aided by the constant presence of his wife, who appeared far more concerned than WG. Unfortunately, seven years later, he had an asymptomatic late relapse manifested initially by an elevation of his serum alpha-fetoprotein level. During the ensuing seven years, he endured frequent attempts at surgical extirpation with each operation causing more physical and emotional distress.
Several chemotherapy regimens produced temporary reductions in his alpha-fetoprotein level. His wife was always there for him in a very close and loving relationship. Finally, he reached a point where I had to tell him that further treatment would produce far more harm than benefit. WG was never enthusiastic about undergoing increasingly toxic treatments at the best of times. However, after the discussion regarding futile and harmful treatment, he asked about any type of therapy no matter the adverse effects. His rationale was that even if it could provide one more day to be with his wife he was willing to endure further toxicity.
Sadly, we had truly exhausted all options. Shortly thereafter, he died at home with his wife as his constant comfort at his bedside.
ES was 16 years old when he was diagnosed with metastatic testicular cancer. He was treated with bleomycin, etoposide, and cisplatin on a pediatric oncology protocol. And achieved a brief partial remission followed by a rapid progression. He was then referred to Indiana University for salvage chemotherapy. He was a candidate for high dose chemotherapy with peripheral blood stem cell transplantation. His probability for cure was at best 20%.
And in my opinion, this was his only curative option. His college educated parents accompanied him for his initial outpatient appointment, and decided to take him to Mexico for alternative therapy. Thereby eliminating any chance for a cure. His parents loved ES just as deeply as WG loved his wife. We oncologists try to provide wise counsel and comfort on the basis of data, information, and evidence based medicine. Ultimate decisions cannot be mandated however. And even the best evidence for or against a particular treatment may not stand up to the power of love in its many varied expressions.
LP was 32 years old when she was diagnosed with stage 3B T4 N0 adenocarcinoma of the lung. She was a never smoker, and her disease presumably was the result of mantle radiotherapy she received at age 10 years for childhood Hodgkin\'s disease. She sustained injury to her left phrenic nerve resulting in an elevated hemi-diaphragm as a post operative complication of her staging laparotomy. Her subsequent lung cancer was in the opposite right lung. She was treated at the time of diagnosis with cisplatin and gemcitabine with stable disease.
Upon progression, she received docetaxel as a second line chemotherapy. She was subsequently referred to Indiana University, and evaluated by our thoracic surgeon. He described a resection that would be high risk and low yield. She was informed that her complicated condition of stage 3B lung cancer coupled with a paralyzed left phrenic nerve with elevated and hemi-diaphragm meant she was at significant risk of becoming ventilator dependent. And that there was a real probability of post-operative mortality.
She looked him in the eye, and stated that she had two young children. And if there was any chance for meaningful survival, she was willing to take the risk. As predicted, she required ventilator support for two weeks. But fully recovered. Two years later, during a routine office visit, she had tears in her eyes, and I had a lump in my throat, as she declared she never thought she would be alive to celebrate this day as both of her children had now graduated from kindergarten.
She is still alive 15 years later, and still finds joy in family milestones with her husband and children. Over this time, she has undergone a craniotomy for resection of metastatic lung cancer as well as the completion pneumonectomy. She has not responded to any subsequent systemic therapies. Last year, she underwent laparoscopic nephrectomy for simultaneous renal cell carcinoma with a focus of metastatic adenocarcinoma of the lungs. Her love of life and family had provided her the grace and courage to continue the fight.
Tragically, as I write these words, there are no further systemic or surgical options. And she was recently enrolled in hospice 15 years after the diagnosis of inoperable stage 3B lung cancer. There have been dramatic changes in the science and practice of medicine. And the chaos of a typical clinical day often detracts from the traditional doctor patient relationship.
Despite the chaos, we still learn to be humble and are continually inspired by our patients. We can mentor our students, residents, and fellows about medical facts. But the ability to convey empathy and compassion is just as vital as the knowledge of complicated pathways. Our patients deserve our knowledge and experience. But this only goes so far without love to guide them in their decision making. To foster and understand the factors that keep our patients living in the face of terminal disease, we need to endeavor to have a better understanding of love in the time of cancer."
I\'m Lidia Shapiro, editorial consultant for JPO\'s Art of Oncolgy. And the host of this podcast. With me today, is Dr. Larry Einhorn. Past ASCO president, professor of medicine at Indiana University, and one of the giants in the world of cancer medicine. Dr. Einhorn is the author "Love in the Time of Cancer." Larry, welcome to our program.
Thank you. It\'s a pleasure to be here.
Great to have you. Before we get started talking about your beautiful essay, let me ask you a more general question. I usually ask our writers to tell us what they\'re currently reading. What would I find on your night table?
Well, quite a few different things. I\'ve taken to several different authors that I like. One of them is Tom Perrotta, whose newest book just came out, Mrs. Fletcher, that I just downloaded. And I\'m trying to think. What else I\'ve read recently? Something that is very strange is a book on what\'s called counter-factual. It\'s called What If? Talks about various episodes that happen in the world\'s history, and what would happen if something different happened.
And this is probably very applicable with the quote unquote fake news thing that\'s going on with alternative facts. So it\'s kind of very interesting looking at these type of things. But most of what I read is fiction. And I like science fiction. And I like well-written detective and mystery stories.
Sounds terrific. Sounds like you\'re a well-rounded reader.
Yeah, and I get the last book that I finished was All the Light That You Cannot See. And I\'m trying to remember who the author is, and I can\'t remember because it\'s such a beautifully written book.
Yeah, it\'s Doerr. And it\'s a beautiful book. I enjoyed that one as well. And do you read about illness as well? You based this story on Gabriel Garcia Marquez\'s beautiful story Love In The Time of Cholera. It sounds like you read about illness. And you have a very broad taste in fiction and in the literature.
Well, I like well written literature. And I rarely read about medical things. But Gabriel Garcia Marquez has such a beautiful way with language. Not just the magical realism that he does, but just language as a whole. It just is like listening to a symphony reading his literature. And I had read Love In The Time Of Cholera a long time ago. I don\'t even remember the year that it came out. And he\'s just such an amazing author.
Tell us a little bit about how you went from Love in the Time of Cholera to thinking about "Love in the Time of Cancer." Was there a clinical scenario that moved you deeply? Or is this sort of what we\'re reading here is this the culmination of four years of oncology and your distilled wisdom?
Well, I think that the idea in some of the vignettes I had in Love in the Time of Cholera-- "Love in the Time of Cancer-- sorry, is love is such a powerful force. And it drives so many of our emotions, and directs us into things that we do and do not do. Some foolish and some wise. And I actually was struck most by my young testicular cancer patient who was educated, his parents were educated. And despite lengthy conversations with them, they opted not to pursue what could potentially be a curative therapy.
And I had no question in my mind about the love that their parents had for their son. Just as I had no question in my mind with the other testicular cancer patient that I highlighted who somewhat semi reluctantly went through treatment, after treatment, after treatment with more and more toxicity. And when finally it was time to say that there was no more treatment that could be beneficial for him, he looked at me and I practically had tears in my eyes as he said, if you can just do something that would let me spend one more day with my wife, I would take any type of toxicity. And that type of love is just amazing after all the things that he\'s been through. It\'s like going through this whole epidemic of cholera in Love in the Time of Cholera. And this whole time series of the two protagonists in Gabriel Marquez\'s very beautiful novel.
What I\'m hearing you say, and what I took away from the essay, is that we need to respect those bonds of love even if they drive people to make decisions that we may not agree with. Is that correct?
Absolutely. Absolutely. We provide information and knowledge. But this is ultimately it\'s not-- this whole TV series Father Knows Best, it\'s not a doctor knows best. These are shared very difficult conversations and decisions. And they\'re shared with the patient and the family. And any of us know who takes care of patients that we take care of families not just patients.
You know, leaders and listeners may be curious to learn more about the pragmatic elements behind your career taking care of patients. So when it comes to these very poignant conversations and advice, how did you earn this wisdom? Did it come to you in stages? Can tell it\'s a little of that?
Well, there really is no substitute for experience. And I think all of us are uncomfortable with these conversations when we\'re house staff, and fellows, and junior faculty members. And you sort of find your own comfort level. And I think what I\'ve come to learn because I deal with two very different diseases, I deal with young men with testicular cancer where the goal and the achievable goal is cure. And I also deal with lung cancer where most of our metastatic lung cancer patients as you know, are going to live longer and live more comfortably. But there are very few five year survivors with lung cancer.
And you sort of learn along the trajectory of an illness that for most people hope is better than despair. And to offer something meaningful rather than to offer something that is just injecting something into their veins so that you can get to the next patient in the office is what you try to do. You develop humility. You develop empathy. You develop compassion. And I don\'t think that these are innate traits in any of us. I think we learn this through our experience with patients. And it\'s an ennobling profession. Medicine is a great profession. And I think oncologists have a very unique relationship with their patients. Arguably very different than any other profession.
And I think you also realize that we all have pain and suffering. We all don\'t have cancer. But we all need help in going through these difficult phases of our life. And pain and suffering is part of the human condition. It\'s part of all major religions. And what you try to do is help steer patients along the right way to make a right decision, to be armed with facts, and to treat them with respect, and humility, and compassion as I mentioned. The long answer to a short question.
And while your on a roll here, let me ask you, how do you actually do this with your trainees? With your fellows?
Sure. So I would have to admit that it\'s becoming more difficult with the time constraints that all of us face. But when I have medical students, residents, and fellows in my clinic, which I always do, they will go in and do the initial history and physical examination.
And I try as best as possible to have them come with me when we\'re having a meaningful conversation. If it\'s someone who is just coming in for annual follow up with testis cancer, obviously, that\'s not necessary. But any time that we see a new patient and go over what the goals of therapy are going to be, or any time that we have someone who has had further progressive disease, and we have to look at what the next step if any steps should be, we try to have these young physicians, really not that any of us do it perfectly, but just have a concept of how we discuss things. And at the end of the conversation, after I\'m outside the patient\'s room, I ask them if they have any questions about that conversation. And any suggestion about things that could have been said or should not have been said.
Larry, where and how did you find support or perhaps is it in love that you find the strength to renew yourself and your reservoir of compassion?
Well, I\'ve been married for 52 years. I have to get my own mathematics over here. And have I been very fortunate with my wife, Claudette. And she is a source of strength for myself. And I always tell her that when I come home on a Monday or Tuesday, that\'s my testicular cancer clinics, and you really feel energized. And when you\'re seeing lung cancer patients all day Wednesday, again, they\'re really amazing advances being made in lung cancer in the last several years, but it\'s tell a very different type of clinic. And you try not to bring your work home every day. But it\'s nice to have family discussions and someone who\'s not in the medical field. Many physicians have their spouses who are also physicians or oncologists. And it\'s probably a different type of dinner table conversation.
Well, maybe the take home from this interview is that physicians should look for non physician spouses as life partners.
Who are understanding. Well, my wife said something that\'s very true when we have some of these conversations. She says that\'s a serious condition like cancer can bring out the best or the worst in a relationship. And we\'ve seen both. We\'ve seen couples who are divorced, and the husband or wife will go back to their spouse in their last couple of weeks or last couple of months of life to provide them comfort. And we also see patients who are in a relationship with someone, and the spouse can\'t bear what the person is going through. The idea that I take you in illness and health and through good times and bad times, and has led to separation and divorce sometimes.
Yes. This is a beautiful meditation. Love in its many manifestations and how it helps to provide solace and peace. And also this conversation I think helps us understand that we too need love and sources of comfort and peace. Perhaps this is part of a larger conversation on resilience. And how patients and families overcome the challenge of a serious life threatening or life altering illness. And how we, as their clinicians and professional caregivers, respond to that suffering. So Larry, thank you so much for sharing your wisdom.
Well, thank you.
That was Dr. Larry Einhorn sharing his reflections on his 40 year career in oncology and his essay, "Love in the Time of Cancer." Join me next time for another conversation about the art of ontology.
I\'m Lidia Shapiro. Editorial consultant for JCO\'s Art of Oncology, and the host of this podcast. With me today is Dr. David Korones, pediatric oncologist and palliative care specialist from the University of Rochester Medical Center and the author of "Talking to Children with Cancer, Sometimes Less is More," published in the October 1st issue of JCO. David, welcome to our program.
Thank you. It\'s good to be here.
I also want to thank you for your many contributions to Art of Oncology as a contributing writer and reviewer. You\'ve really brought a very important perspective to our board and to our readers.
Well, thanks.
You\'re very welcome. In your most recent piece, David, you deal with what I think is one of the most difficult aspects of communication in oncology. And you\'ve structured this essay almost in two parts. There\'s a story, the story of Kenzie. And then there\'s your reflection that is more scholarly where you really present a perspective on how to negotiate just how much information needs to be shared with an adolescent and her family who tell you that they really don\'t want to know. Can you start by sharing with our listeners a little bit about your story and how writing about it perhaps helped you process the very complex situation and feelings this situation triggered for you?
Well, sure. I think you\'re right. I don\'t think there\'s anything more daunting than having to communicate such horrible news to a child or to a teenager. And I also think that there was this inherent tension in this when a child tells you that they don\'t want to know. Because all our teaching is about being honest-- full disclosure. So we have this force of what the standard is. And then the other side of it is that child who doesn\'t want to know, who doesn\'t want to go by our standard. And it just creates a lot of tension in a situation that is already heartbreaking.
Yes, and you wrote it so beautifully. And I\'d like to read for our listeners just a little bit of your essay. You wrote, "I know the evidence supports the practice of telling the truth. And I can recite the benefits of doing so. But let me tell you that when it comes to sitting down with a child, looking her in the eye, and telling her she\'s dying, it is impossibly hard. All that knowledge, accumulated wisdom, and experience flies out the window, and is quickly replaced by paralyzing heartbreak."
I was really stunned by that. It\'s just so beautifully stated. Tell us a little bit about that emotional aspect of the experience, and how you dealt with this paralyzing heartbreak.
And this is but one story. I feel like this happens almost every time where you read the books, you read the articles, it\'s clear what you\'re supposed to do, but then reality sets in. And when you\'re sitting in front of a child and family, it just doesn\'t get any easier. And on a personal level, it\'s just so utterly heartbreaking. And sometimes it is paralyzing. And I hope in writing about it-- actually that helped free me of some of my paralysis. But I hoped also in writing about it that I can let other people out there know that they\'re not alone.
Yes. In fact, I think that that\'s one of the very useful aspects of sharing our stories. And it helps others connect. It helps us connect with our community of oncologists. And also by writing, I think that in many ways you helped us imagine and explore the point of view of Kenzie and her parents, which is something that we often don\'t have time to do when we\'re pressured to make decisions in the moment when we\'re in the clinic or the hospital setting. So maybe it would be helpful to have you just tell us a little bit about Kenzie. Who was Kenzie? And tell us about her and her family.
Yeah, I think I wrote about her because, as I mentioned, she\'s not the only one that I had struggled with-- that we all struggle with. But there was just something about this girl. And I think we probably all experience this with some of our patients.
I wrote that she is beautifully normal. And she just could be any of our children. And so that takes it from the professional realm to the personal. Fingers flying on her cell phone dressed like any other American teenaged girl would be dressed. And that just added a layer of heartbreak to it.
She was remarkable also in that she was just comfortable in her own skin. She\'s a girl who could live very comfortably in the present, and wasn\'t weighed down by what the future held. She\'s a girl who could just savor the normalcy that her days at high school brought to her. She is a girl who was loved by friends and family.
Yes. And she\'s a girl who was so direct with you and your team. You talk about the fact that she was very quick to tell you what she wanted to know and what she didn\'t want to know. Now, you met her on a Valentine\'s Day in the ER. Tell us a little bit about that first meeting.
Yeah, well, I mean, I think I wrote about this too, kind of an extra element of heartbreak. I mean, it\'s on Valentine\'s Day of all days. And it was this beautiful soft snow falling. And here I am out buying a Valentine\'s card for my wife when this horrible event unfolds.
And I think what really struck me when I went to the emergency room, is seeing this-- again, this beautifully normal girl who just looked like any other American teenaged girl. And I was kind of weighed down by what I knew lay ahead for her, and the stark contrast between how normal her life had been up until that moment, and how all of that was going to shattered. And just the weight of that uneven distribution of knowledge, me knowing what lay ahead, and her and her family not just added to the heartbreak.
That\'s such an important aspect of the delivery of bad news just when we, as the oncologist, we know it. We\'re holding it. And we know things that the patient and her family don\'t know. And know just how this is going to affect them. And then finding a way perhaps of getting past that to connect in a helpful way.
You speak a lot about the fact that this relationship worked because it was a lot of trust. And I imagine that\'s what you felt at the beginning as well. That this was your one and only opportunity really to connect, and start building that trust that would guide you and the family. And keep you going as events unfolded, and as you knew predictably that things would get worse and worse.
Yeah. I think I also knew that I have to earn that trust, that that trust doesn\'t come from walking in the room with whatever credentials I might have-- that one has to develop, and earn it, and work for it And it all starts by listening. And part of that listening was honoring what she wanted to know and didn\'t want to know, and what her parents felt would work best for her.
Yes. You talk and you write about saying that it\'s OK for us to sometimes be unsure and to feel unsettled. I wonder if you could tell our listeners a little bit about how you and your team negotiated this over time. It seems that you sort of went back and forth, and tried over and over to assess just how much they needed and wanted to know. Tell us a little how that actually worked out.
Yeah, you would think-- I write that Kenzie clearly didn\'t want to know. And we think, well, what\'s the big deal? We explored that. She doesn\'t want to know what\'s going to happen to her. And case closed. But it just wasn\'t that simple.
For one thing, real time, when you\'re in the thick of it, it\'s always so weightier, and so much less clear than it is in hindsight. And for another, I think that it was so unusual for us to have this mature teenager where we knew what the path was. And yet, she didn\'t want to know what that path was herself. Or at least she didn\'t want it in her face.
And I think because it was so far from what we\'re used to, we wanted to make absolutely sure we weren\'t missing something. One thing I struggled with is am I just taking what she says at face value? Not exploring enough so that I can avoid having those awful conversations? I think I might have mentioned this. Am I just eager to jump at a pass on a hard conversation, or is this truly what she wanted? I think in the end, I think it takes a lot of back and forth with her, her parents, and with our team to make sure we were on the right path.
So in our final 30 seconds, can you tell a little bit or speak a little bit about how writing about this helped you perhaps to clarify you thoughts or process this very complex situation.
Absolutely. It helped tremendously. And I think just on a raw emotional level it provided a release. On another level, it just helped me think about this this more methodically, systematically, not to get rid of the emotion, but to have rational thought as part of the process. And it was just a nice way to honor a remarkable young girl.
Thank you. That was David Korones talking about his most recent essay, "Talking to Children With Cancer, Sometimes Less is More." Join me next time for a conversation about the art of oncology.