Oct 25, 2022
Listen to ASCO’s Journal of Clinical Oncology essay, “Preparing for the End Game,” by Dr. William Beck, a University Distinguished Professor Emeritus and Professor of Pharmacology and Molecular Genetics at The University of Illinois at Chicago. The essay is followed by an interview with Beck and host Dr. Lidia Schapira. Beck reflects on his own mortality and what it means to live, following his good friend’s illness and death from lung cancer.
Narrator: Preparing for the End Game, by William T. Beck, PhD (10.1200/JCO.22.01758)
Recently, Jordan, a dear friend who had stage 4 lung cancer, died of his disease, a year and a half from his diagnosis. His tumor had activating mutations in the epidermal growth factor receptor, making him a candidate for treatment with osimertinib, a targeted therapy, one of the recent rewards of the remarkable advances in precision medicine. Jordan was my age, late 70s when he died. He was a lifetime nonsmoker, had several outstanding lung cancer oncologists, and was determined to fight his disease. That said, 3-year and 5-year survival rates for people with his disease are not high, but living beyond those years is statistically and biologically possible. That was not so in Jordan's case.
Jordan's illness was distressing to me because he was my good friend. We went back decades and began our academic careers together, and we bonded through our shared academic experiences and our love of good wines, food, books, humor, and politics. Over the course of his illness, I tried to think of how I could be there for Jordan and his wife, also a good friend, as he went forward on this very difficult journey. Jordan was very fortunate to have state-of-the-art medical care, a loving wife and adult children, and many close and caring friends who wanted to walk with him on this journey to the extent that he wanted us with him. Because I was in the cancer field, I was able to help him and his wife better frame the questions to ask his oncologists, understand the tests ordered and drugs he was taking, identify other oncologists for second opinions, and search the literature to help them find the best treatments to hold the tumor at bay.
Jordan's illness, however, was distressing to me for another reason. It made me think about my own mortality and how, if it were me, would I want to spend my last months and years, knowing that the end is now a reality. Jordan was a retired academic, scientist, and long-term and consequential university administrator. Like my friend, I have been retired for a few years, having run a productive academic cancer research laboratory and having held a number of administrative positions as well.
My distress was compounded by external events over these past few years. We have seen the deaths of so many people from COVID-19 in this country and the world, all so painful and many unnecessary. We have also seen the continued violent deaths due to guns and drugs. These, however, were largely deaths in the abstract; they did not have a face for me. That began to change with the extraordinary culmination of the epidemic of Black deaths at the hands of the police, especially the murder of George Floyd. These deaths brought home to me the face and randomness of death and fragility of life, writ large. The past year brought more faces of death to me: many prominent artists and baseball players, whose careers I had followed; internationally impactful cancer scientists and physicians, many of whom I knew personally; and the untimely death of the famous architect, Helmut Jahn, at age 81 years, in a bicycle accident. All these passings have given me pause in a way that I had not expected and starkly reminded me that there is absolutely no guarantee of a tomorrow. Indeed, I will no longer live by the brilliant conceit offered by William Saroyan: “Everybody has got to die, but I have always believed an exception would be made in my case. Now what?”1 Now what, indeed.
One frequently hears about people who have survived near-death experiences or those who have been diagnosed with a terminal illness, having an epiphany and wanting to live each day to the fullest extent possible. One also hears about realists who exhort us to live every day as if it were our last. Certainly sound advice. But do we normals really adhere to these dictums? Many people probably do, but my experience, both personal and from talking with friends, is that most of us still go about our lives doing the quotidian things that we have always done. There is always tomorrow, but Jordan's illness has caused me to rethink that. Indeed, it has become increasingly clear to me, finally, that I should not put off doing things for another tomorrow, a tomorrow that is not guaranteed.
Despite knowing—in the abstract—that much more of my life is behind me than in front, my good health and full days have led me to think that this can go on for some time, with the inevitability of death still relatively far in the future. Jordan's situation, however, has changed that perception and has got me thinking about how I would like to spend my remaining days, hopefully many, and thinking about how to really prepare for this end game, taking these final laps.
Paul Kalanithi, a young surgeon, wrote so tenderly in When Breath Becomes Air2 about his struggles while suffering the ravages of lung cancer and his hopes for his wife and young children. Even at my advanced age, I too have similar hopes for my wife, children, and grandchildren. And Christopher Hitchens chronicled, in Mortality,3 his last year with esophageal cancer as fiercely as he had always done in his critical atheist's view of the world. But it was not until Jordan's sickness and death that I have taken Hitchens's clear view of life's limitations to heart.
In his book, Being Mortal,4 Atul Gawande, the physician-writer, has chronicled both the advances and limitations that modern medicine has brought us as we face the end, including the complications that limit our autonomy in this passage. Gawande notes that as we age and become infirm, either as a normal process or because of disease, we become more dependent on medical and social networks that may, unfortunately, effect on our independence. Gawande suggests that a good death may be difficult to achieve but a good life less so. I saw this good life in Jordan's terminal illness. Indeed, another physician-writer, Oliver Sacks, emphasized in a short collection of four essays entitled Gratitude,5 the utility of a good and fulfilling life in helping us cope as we approach the end. Near the end of his life, as his body was being consumed by cancer, Sacks continued to do what he always did, for as long as he could: His days were always full, and he wrote beautifully of his clinical and social observations. Importantly, Sacks expressed enormous gratitude for his life as a sentient and thinking person, who loved and was loved, and whose life was consequential. What more can one want?
My friend Jordan was such an individual: sentient, smart, and funny; a man who lived a consequential and impactful life, who loved and was loved. His illness, however, was not one of going softly into the good night, as was depicted in the movie Love Story.6 Toward the end, my friend suffered with pain, balance problems, fractures from falls, shortness of breath, insomnia, and the like. But through it all, he presented, at least to me, an admirable grace and equanimity that gave us all hope that despite his suffering, there would be one more day, one more week, one more month.
My wife and I went out to northern California last winter to visit Jordan and his wife, and although unsaid, to say good-bye. But now, more than a half year later, he died, just days short of their 50th wedding anniversary. We have stayed in close contact with Jordan's wife since his death. The funeral was private, but my wife and I attended a subsequent memorial service for Jordan at which family, friends, and colleagues remembered him and his consequential life and bid him a proper farewell.
So, here we are. My good friend is gone, and his struggles have been hard to watch, even from a distance, but he has helped me see more clearly that this all does come to an end at some point.
So how do I want to pursue this end game? Certainly, I want to stay engaged in my science-related activities. But I also want to use what time I have left while I am healthy to spend as much time as I can with my wife and family, to be with good friends as much as they will tolerate me, to continue to read, to go to theater and concerts, to travel, finding humor in life, and enjoying good wines and food—all the typical things that people do and say they want to do as they approach the end game. Indeed, I want to do as many of these things as possible, but with a renewed sense of wonderment and gratitude, gratitude in the way Oliver Sacks expressed it. My friend, Jordan, the academic, still has some lessons to offer, so I will try to follow his example to live as good a life as possible, and if I become infirm, I will try to remember how he approached the end: with grace, courage, and equanimity and reflect on all the good things I have had in this life, with a great sense of gratitude.
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: podcasts.asco.org.
I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University.
Today, we are joined by Dr. William Beck, a university distinguished Professor Emeritus, and Professor of Pharmacology and Molecular Genetics at the University of Illinois, at Chicago. In this episode, we will be discussing his Art of Oncology article, 'Preparing for the End Game.'
At the time of this recording, our guest has no disclosures.
Bill, welcome to our podcast. Thank you for joining us.
Dr. William Beck: Thank you, Lidia. I appreciate the opportunity. I think this is a unique and valuable feature of JCO, and I hope I can do it justice.
Dr. Lidia Schapira: It's terrific to have you. Tell our listeners a little bit about the motivation for writing about Jordan, and the effect that his illness and passing had on you.
Dr. William Beck: Yes. Well, his illness and death made me think of my own mortality, and how if it were me, would I want to spend whatever remaining days I have, hopefully, many. But hopefully, in a way that would allow me to honor his life, and also do justice to my own situation. So, that was the nexus of the issue. I spoke to a writer friend, Eric Lax, he's written a number of books; one is, The Mold in Dr. Florey's Coat. If you haven't read it, I highly recommend it. It's about commercialization issues during World War II, and he's written some other books as well, a book with the hematologist Robert Peter Gale on radiation. And I asked him what he thought about this, and he was very positive. As you, I'm not accustomed to opening myself up in the scientific literature. I write scientific papers, and they're not emotional. One might get emotional about the reviewer's comments, but that's another story.
And so, this was a difficult thing for me to write, but I felt if done correctly, it might be useful not only to help me articulate my own feelings, but it might be useful for others, especially oncologists with whom I've been around in my entire professional life, and who deal with these matters daily, as you do. But most likely, and of necessity, keep their thoughts and their own mortality locked away. And I sort of thought that this might be a way to help others think about ‘Preparing for the End Game’.
Dr. Lidia Schapira: You bring up some interesting points because in order to write a piece that will resonate with others, you have to allow yourself to be vulnerable, and that is not something that we are taught to do in our academic and professional lives. Was that hard for you?
Dr. William Beck: Very, yes.
Dr. Lidia Schapira: And how did you work through that period of deciding to make yourself vulnerable and then share that with colleagues whom you may never know or meet?
Dr. William Beck: Thank you for that question. I wanted to write somewhat of an homage for my friend, Jordan, and that made it a little easier to open myself up. And I might add, I shared this, after it was accepted, with Jordan's family - his wife, who is a friend, and his two adult children. And they all very, very much appreciated what I had done. So, I felt I was on the right path with that. So, it was in part for an homage to Jordan, and I had walked with him and his wife during his illness, and then with his death, and I wanted to mark the event in a way that I felt more than just giving money to a memorial fund. I felt I wanted to make it very personal, he was a good. I don't know if that answers your question, but that's why I started it.
Dr. Lidia Schapira: In thinking about your essay and the way you chose to honor your friend and his memory, what do you think is the message for some of our young readers?
Dr. William Beck: That's a good question. I put myself in the 40-year-old Bill Beck mindset, and back in those days, as I said in my essay, you know, everyone has to die, but in my case, I thought an exception would be made. Jordan's death, and those of others around my age have led me to understand that an exception will not be made, and I want to make the best of it, and if our young readers who know that this is an abstract that's very far away, but it becomes more and more of a reality as you approach the end, and I'm guessing that our younger readers who are oncologists can wall that off with difficulty, but can wall it off to a certain extent. But it's there. It's inescapable, and so, maybe preparing early, if it even makes you think about enjoying a little bit more time with your kids, enjoying a vacation for another day, or even putting a little bit more money away for your IRA for your retirement, that could be very useful for them.
Dr. Lidia Schapira: On the flip side of that, Bill, you write in your essay that you have continued to remain involved in your science, and I imagine that's because you love your science. So, tell us a little bit more about how you're thinking now, as you are mature-- I won't use the word senior, or old, about continuing to remain involved in a career that is not just work, but something that you love.
Dr. William Beck: I could not imagine retiring. What I enjoy about my retirement is that I basically do everything that I did before, except the administrative part - the running a department for so long. And I do it on my schedule, not somebody else's schedule, and that is liberating. I just came back from a two-hour lecture that I gave yesterday; I mentor young people, I review grant applications and manuscripts, I read the literature. So, I stay involved. I can't imagine not being involved. And as Oliver Sacks, whom I've cited in the essay, he went at it all the ways best he could all the way to the end, and I hope that I will have that opportunity to do so as well.
Dr. Lidia Schapira: What advice would you have for some of our listeners who are themselves accompanying a friend who is ill, or perhaps a relative who is facing a chronic or terminal illness?
Dr. William Beck: I'm loath to give advice, but I would suggest that they might want to be there as much as their friend wants them to be there for them. To be there, and for them to know that they're there. I was in a unique position because I knew a little bit about the cancer field, and I could help Jordan and his wife navigate the shoals of interacting with physicians, and understanding their drugs, and getting second opinions, actually, for them. So, I was in a fairly unique position, but I think that the key thing is to be there to the extent that the individual wants you to be there with them is important. That's what I've learned from my deep emotional involvement with Jordan, but with others as well.
Dr. Lidia Schapira: As you know from reading the essays we've published in Art of Oncology, Grief is a common theme, and I ask many of our authors to recommend, perhaps, some books they've read, or works of art that have helped them in processing their own grief. So, let me ask you if you can recommend any books, or poems to our listeners.
Dr. William Beck: I'm not much into poetry, but I did happen to see an amazing interpretation of Psalm 23 on the Jewish Broadcasting Network recently that was eye-opening to me as a non-religious person. That was very interesting. In terms of books, I think a good start is the beautiful essays of Gratitude by Oliver Sacks. I've started to peel into, and peer into a book on Morality, by Jonathan Sacks-- no relation, I don't think. He was the Chief Rabbi of the UK. And in terms of art, I can think of music - the ‘Pastoral’, by Beethoven, and the ‘9th’, by Beethoven, are the ones that just are so uplifting to me, that I think would be very important to calm one's soul. Also, if I might add, The Stones are pretty good too, for that.
Dr. Lidia Schapira: So, let me conclude our interview by asking you a little bit more about the role of storytelling, and essays, and narrative, in helping us come together as a community of professionals who are actually dedicated to looking after patients who are seriously ill. How have you used stories in your approach to Medicine and Academia, and what do you see as the role of these narratives in the future education of oncologists and hematologists?
Dr. William Beck: So, I think young people, especially, need to hear stories of how these things begin. They need to hear origin stories, and middle stories, and end stories. Joseph Campbell, is one who's delved into where we came from, and about storytelling, as being very important in development of societies and traditions. So, I've tried in my work, even though it's scientific work, and maybe some of my reviewer critics would say, "Well, it's all stories and fables," but I've tried to develop several lines of science storytelling for our colleagues. And I think in general, whether it's in science or this kind of essay, yes, it's very important that the young people get outside of the, "What do I need to know for the exam?" mentality, to look at the bigger picture; and I'm afraid that's getting lost in modern education. The guy who introduces me, when I give the general lecture to all the students who are first time, first day in the room, never to be in the room again, always says, "And Dr. Beck won't answer any questions about what's on the exam."
Dr. Lidia Schapira: Well, I thank you for sharing some of your humanity with the readers of JCO, through the essay. I know, as you told us, during the review, that you're not used to writing these kinds of essays, and you're much more comfortable with scientific work. But I think we need to show the human side of our scientists. I think that Jordan's family is right in thanking you for the tribute you paid to him through this essay, and I'm very glad that you did write it, and decided to share it with us.
Dr. William Beck: Thank you. Well, I'm really glad that you have this venue, and I'm honored to have my essay published in it. I thank you, and your colleagues.
Dr. Lidia Schapira: Thank you, Bill.
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Dr. William Beck is a university distinguished Professor Emeritus, and Professor of Pharmacology and Molecular Genetics at the University of Illinois, at Chicago.