Julie Ngauv, 2017
The first time I listened to Dr. Gary Taylor’s story was at a seminar on a sunny Monday morning in mid-July. He was seated with several other panelists, all from a variety of backgrounds; each bearing stories from their own journey with cancer. As they spoke, my heart grew heavy—there was a single common thread in every story: each panelist advised us as future physicians and researchers, imploring us to never forget to see a patient as a whole person, to never become jaded and lose sight of why we were pursuing these specific dreams.
The second time I listened to Dr. Taylor’s story was a Thursday evening in the midst of winter. We sat in a bustling Starbucks, and introduced ourselves to each other. He had a kind, smiling face; his voice compassionate and thoughtful. He was an internist and gerontologist specializing in addiction medicine, he told me, but “out of practice for nine years this month.” He had practiced medicine at Carney Hospital in Dorchester for 23 years, but had to stop to care for his wife in 2008, shortly after she was diagnosed with metastatic breast cancer. “I never quite made it back,” he explained, “it was the first time in my life that I wasn’t in school or working.”
A few years after his wife’s passing, in 2015, he decided to run the Boston Marathon—something he had done before and wanted to do again. In training for it, he decided that he might as well get a physical. His doctor performed a standard prostate-specific antigen (PSA) test, which Dr. Taylor had been getting regularly “since his forties,” because his father had had prostate cancer. His levels of PSA had more than doubled—1.9 to 4.9. Thinking it was a fluke, the test was repeated a few more times, but the results remained stable. Dr. Taylor visited a urologist, who doubted that the results pointed to cancer, insisting on treating him for prostatitis instead—something he didn’t have. He tells the rest of his story without missing a beat, “We finally got around to doing a biopsy, and the biopsy showed that I not only had prostate cancer, but fairly aggressive prostate cancer.”
“Devastated,” is the one word that he would use to describe his reaction. “Absolutely devastated… It completely blew me away. I was convinced that the biopsies were going to be negative. I could not believe that they were positive, like—are you serious!? I really knew I was in for a fight.”
Cancer is just as much of an emotional battle as it is a physical one, and as with any battle, it cannot be fought alone. At first diagnosis, even a personal understanding of one’s own current condition is difficult to come to. Many times, patients struggle, searching for a specific cause, needing someone, something, anything to accept blame—sometimes even themselves.
“I remember I talked to an oncologist friend of mine, and I will never forget what she said. ‘Everybody gets something. It’s your chance to get sick. Why not? You’re human like everybody else… these things are going to happen if you live long enough.’” He valued the sentiment greatly. “She was right; a lot of people get cancer. Just because you’re a doctor doesn’t mean that you’re immune from things like that. But I really did become a doctor to live a better life, to really take better care of myself, so I felt like I had done a bad job in many ways… I still got cancer, but I knew that it wasn’t my fault. It was just one of those things.”
One of his biggest frustrations with prostate cancer was that there was no standard of care, and, so far, studies haven’t produced any conclusive evidence on which of four treatment options (surgery, radiation, hormonal, and the less-interventional choice of “watchful waiting,” in which a patient opts instead to consistently monitor the cancer for signs of progression) for prostate cancer is more preferable. “Prostate cancer is probably the type of cancer that requires the most in terms of education of the patient. You really have to be educated. You really have to know what you’re getting yourself into.” There was nothing close to adequate research available in aiding his decision.
Dr. Taylor is quite passionate about someday rectifying this—when I asked about the message he would most like to convey, he spoke again of research. Research was key, he insisted. Lack of sufficient research comparing different types of prostate cancer treatment made it necessary for him to get multiple opinions from various doctors, making it very difficult to decide on the steps that he would take going forward. He emphasized that this would most likely have made it impossible for the average person who lacked the medical connections that he had a physician. With this, and his experiences as a black man practicing medicine, he insisted that people—“especially African Americans!”—get involved as subjects of research studies. Elaborating, he said:
“Research has been a sore subject for us for many, many decades, and we’ve been treated like guinea pigs and disrespected. But now things are different… I would encourage people to get involved in research, because we need to find more answers about this. One of the reasons we know very little about it is because there’s not very good studies, and so we need more people to be available to do that. I must tell you, that’s a different view than what I had when I was a doctor. I truly felt that African Americans in particular should not be involved in research, because I felt like we were subjected to things that we perhaps shouldn’t have been, and the care was worse, you know, in many ways… but that’s just not true anymore. Everything is now standardized; you get baseline labs and everything, and you actually see more providers when you’re [in a study] than when you’re not… I think it’s something people should do, rather than look at other types of medicine like alternative care.”
For the African American community in particular, as Dr. Taylor stressed, research became synonymous with abuse, lack of rights, and pain—well-known cases include Henrietta Lacks’s immortalized cell line (she gave no consent to have her cells used for scientific research), and the sickeningly unethical Tuskegee syphilis experiment, though there are undoubtedly many more.
The first time I heard Dr. Taylor speak, I recall sitting, my pencil hovering above my notebook, wanting to write something of substance down, but hesitating. What could I write to capture these people’s stories? I wrote a few bullet points:
- importance of hope
- empathy, sensitivity, cultural understanding
The words I carried from that day were different—these lives were filled with the unfathomable, days to which “walking a mile in their shoes” could never be applied. The story of a doctor being diagnosed with cancer was something that struck me most. Somehow, it captured a bitter tinge of irony. That day felt so far away when I sat down to hear his story again; this time asking him questions instead of being a passive listener in an audience of researchers. I had brought the very same notebook, this time carefully turned and folded to a page of questions, and a clean page upon which to write his answers.
I asked him the question that had remained in my mind all of those months: “You mentioned in the panel that you had to come to terms with being in a patient’s role instead of being in a doctor’s. Can you speak to that?” He nodded, conceding the lessons he learned from his time in a patient’s shoes, ones that he came to realize could be filled by anyone, really. He talked about being a physician, being the one to make decisions, then about being a patient, having to trust, rely, and listen. “It was tough, you know, because I knew the language… so I knew what they were saying, so I really had to try to refrain from going to the library and looking stuff up. I didn’t do that very well.” In a more reflective tone, he continued, “You know, I’m not sure that’s the best way to do things… I’m a doctor, but I can’t become a cancer specialist specializing in prostate cancer overnight, nor can I do it in a year or two.”
Still, he returned to the library day after day—researching every single thing his doctors mentioned, even when he was meant to be researching other topics. He continued challenging them and asking question after question. It was difficult to adjust to the change of not being in control, he explained. A doctor’s job is difficult because she has to lead, to decide. A patient’s job is difficult because he has to trust. “They knew more than I did, and they were going do the right thing.”
Although his diagnosis devastated him, he didn’t let it defeat him. “I thought I was too young… [though] I was determined to beat it, if I could.” He spent a few months gathering opinions from his colleagues through the Boston area, and finally decided to undergo a radical prostatectomy, undertaken by a friend of his who was a surgeon. It was a difficult experience, but one that he felt was necessary, and one that he eventually recovered from. The surgery was successful.
Eight months later, in June of 2016, he experienced a “chemical relapse.” Just like in the initial test that led to his diagnosis, his PSA levels had increased to a concerning amount—which should not have been the case following the removal of his prostate. This “indicated that there was residual disease somewhere,” causing him to need to undergo both radiation therapy and chemotherapy. Over the course of his treatment, he spent a lot of time in and around hospitals—something he was already accustomed to from his training and during his time in practice, but now his experiences were different. “Hospitals are very cold… I don’t know, I felt like a fly in soup.” He often didn’t tell hospital staff that he was a physician—this caused his comments on his own care to elicit incredulous reactions. “Some people were taken aback by it… people would look at me like I had 12 heads, like ‘What are you doing, trying to tell me my business?’ and stuff like that.” Trying to avoid the sensation of being “a number… just one more person to see,” Dr. Taylor chose to pursue his care at local hospitals.
“I felt more at home there. They’re different hospitals with different goals, and I appreciate the homeyness of the community hospital. I felt like I was getting good care. When I went to the bigger hospitals, I felt lost. I felt like I was just a cog in the wheel. I mean, there’s a lot more layers of healthcare in the larger hospitals… Some people like that, I’m just not one of them. I just like the more hands-on experience of having a doctor, and an NP or PA that I can really sit down and talk to.” His friends were critical of his choice, urging him to go instead to Mass General or Brigham and Women’s. “They were really upset with me; that I didn’t do that. The doctor that I went to—he trained at the Brigham, he’s a very good doctor, and I know that doctors in the community tend to see more, sometimes, than doctors at big hospitals, so that’s why I went that route… [though] I did get second opinions at the big hospitals. I definitely went and got second opinions.”
Being so distinctly in a patient’s shoes is not an experience doctors often encounter. Of course, everyone has their basic annual physicals, but really living the reverse of the patient-doctor relationship—filling the patient’s shoes—is something that is not often encountered. What could possibly be learned by such an experience? Humility, Dr. Taylor insisted. “I’m a lot humbler than I’ve ever been before, that’s for sure. I think I have a new understanding of the patient-doctor relationship.” The importance of listening, of reading between the lines. “It’s amazing how little things really help—how important it is to listen. I’ve always had a good relationship with my patients—I thought I did, but I’m a lot more aware of things. I’m a lot more aware of things people don’t say. I lean into things a lot more. I think I’m more compassionate.”
It’s all too easy, as physicians, to become jaded and view patients solely as conditions to be solved, to be healed, and then to be released—not people. These sentiments echoed the words that I had heard from the other panelists that morning long ago, but in a different perspective—this was the perspective of someone who had lived both ends of the same interaction. Someone who knew how simple it was for one to assume one knew everything, but whom also experienced the receiving end of that arrogant and knowing look. “I’m less cocky than I was before—when I was a young doctor, I just thought that I knew everything… Now, the older I get, the more I realize that I know very little… So it’s important to really understand—there’s still a lot that’s not known.”
Words have power, both in interactions, and as descriptors. Dr. Taylor chooses not to refer to himself as a cancer survivor. “I’m not so sure I survived cancer—it still can come back. I like to think of myself as a warrior, rather than a survivor.” In terms of names, cancer may be the perfect one for the disease. It’s something that encompasses every aspect of a person’s life. As cells divide endlessly and relentlessly, the cancer spreads, entangling even thoughts—forcing them to confront questions of life, and the meaning of death. Even afterwards, one can never really be sure that it is gone, and cancer’s shadow lingers in the sacrifices made and in the time spent fighting. “It did change my life a lot. When they told me about the things I would have to live with if I survived this cancer, I had to think—do I really want to live? Do I really want to go this route? I decided I really did want to live.”
“Every day I wake up, and I thank my higher power—whom I choose to call God—I thank Him for giving me another day. And I really believe that… I try to cherish every single day. And you know, I try to enjoy myself. I try not to dwell on what I’ve lost. I don’t let it bother me. I just look for other ways to keep myself happy, joyous, and free.”