Abstract
“Take me if you need me
But never hold me down”
A
One night last spring, unable to sleep, I gave in to the insomnia and checked my e-mail.
There was one new message, from a medical oncology fellow who had been rotating in my clinic, cryptically titled “Night of 1000 Stevies” (NOTS) and with nothing in the body except for an attachment to a video. I opened it. It revealed, in a drag-theater performance, David (not his real name, and regardless, he frequently voiced how he hoped his illness experience could be used in any possible way, even publically, to help others), my wonderful 50-year-old and now much thinner patient I'd taken care of for a few years for his progressively metastatic gastroesophageal junction adenocarcinoma. The remarkable stage appearance, which the fellow was able to attend, was one the patient knew was likely going to be his last of this kind. Leading up to the show, his condition was steadily worsening, particularly because of advancing dysphagia from the primary tumor. Nonetheless, he had been a fixture in this show for 18 of the past 25 years for which it had run annually in New York City, and performing in it again was a goal of his. A tribute to the Fleetwood Mac frontwoman and entitled the NOTS, the show's website describes itself as “Neither a contest nor a karaoke show, NOTS is the Stevie Nicks celebration ne plus ultra—a riot of shawls, lace, baby's breath, twirling, tambourines, and great performance.”
Despite his many symptoms and other struggles to make ends meet during the few years my team and I had known him, David had always found a way to live life to its fullest. He had accepted the inevitable outcome of his cancer, but never let it hold him down. He would often come to clinic with a rolling suitcase full of makeup and wardrobe items (high heels always included) for a gig of his before or after his twice-monthly chemotherapy with me.
His care started out quite rocky, as he needed to be admitted with marked thrombotic complications of his disease. I remember visiting him one day two years prior while he was admitted to the hospital. My eyes welled up with tears at the sight of such a vibrant person now bed-confined with edema from his cancer-associated clotting. He noticed, and asked me what was wrong. Embarrassed, I tried to tell him the truth, or part of it at least, that I felt bad for him. I was worried, frankly, that he wouldn't get better. In hindsight, it was not only him, but my other patients, too; he was one of five of mine admitted at the time, and I was overwhelmed by it all, especially as a relatively new oncologist.
Today I still get overwhelmed (more often than I like to admit) by the breadth of issues with which we as oncologists grapple. But that spring evening, after watching the video of David and his possibly last-ever stage appearance, I felt I was at a rare peace. I didn't care that I had been sleepless in the middle of the night; I was glad I had been. And I wasn't worried about the fact that David's eating and other issues at the time meant his cancer was likely progressing on his second line and targeted therapy. I wasn't concerned about whether a stent was going to palliate his now near-complete dysphagia from his primary tumor (it ultimately did, and did so for months, despite getting dislodged twice) or whether he would need the venting gastrostomy as a backup option that we had begun to discuss with him in clinic. It wasn't on my mind if he'd be able to handle, let alone ever even see, third- or even fourth-line chemotherapies, not to mention that he was still “full code,” and that we had not talked in detail about what might ultimately be most important to him at the end of life.
David told and showed me over many visits that he had led a good life and that he was coping well with his illness. It was not without tears or hardships, which were plenty for him. The first time I met him, he was pacing the room in an understandable fit of anxiety as a middle-aged gay man with countless friends but no significant other or close family, now diagnosed with an illness from which he knew he would die in the near future. He needed several supports both from within our hospital walls and from beyond. Nonetheless, he handled his situation with unique grace and humor. Clinic visits were most convenient for him at the end of the day, and so he would usually end up being my last patient. Most of the time, I would sink into the chair after entering his room. “Long day?” he would ask. I felt comfortable enough with him to breathe a sigh of relief and admit that, indeed, it was.
David had long ago been able to sense what we were going through as oncologists, and our relationship was strong enough for me to open up with him a little bit about it. Jokes, I quickly learned, were the norm, regularly told by him, and the more absurd the better. Before I was accustomed to them, they would catch me off guard, such as once, when after entering the room, he asked me, “Hey, doc, if I scored some adolescent blood off the black market, you'd be fine with signing off on the transfusions as part of my cancer care, right?” he deadpanned.
In his own way, David touched dozens of people on our team, from the receptionists, clinic assistants, chemotherapy nurses, and many, many others. He volunteered for recording a testimonial about the patient experience when we had an institutional retreat on palliative medicine. Later, even in the third year of his disease, he continued to remain active in the New York community, hosting radio shows and organizing Sunday bingo brunches for charity. And although I wasn't able to be there in person for his NOTS performance, I was relieved the stent ultimately worked, and that he was able not only to feel better but also to live many months longer after the performance.
That night back in May, I thought about how proud I was of all those who have taken care of David and other patients. Just that week on Facebook, the nurse with whom I work posted her thoughts during Nurses' Week about her role in oncology, in which she had grown exceptionally and for which I was lucky to have her by my side. I was proud of the fellow who sent me the video. For months, our fellow was able to see David every couple of weeks, and he developed a relationship of his own with David that led to his and others from our clinic attending his show. But most of all, I was proud of David, who continually showed us how to be human in the face of a serious illness while living life to its fullest. In this land of 1000 patients, David was truly one of a kind.
Just over six months after NOTS (and a few months before his death), others from the hospital and I were privileged to be guests at David's 50-birthday party at a large performance space in New York. The event, one of the most special celebrations of a person I have ever witnessed, included burlesque, drag, cabaret, and stand-up comedy acts, and ended with a heartwarming finale by David himself. He spoke courageously about lifelong struggles as a gay man, the freedom he found in his drag character, and the love he felt in New York. He noted his “strange circumstance” of being diagnosed with Stage IV cancer, but still was able to joke about it, and it was an honor to hear him express that his “circle of love” had extended to my team and me.
He ended the night with a bang, a perfectly lip-synced performance of Bette Midler's cover of Bob Dylan's “I Shall Be Released.” The cancer experience—not just for the patients but also for all those involved—rings true in the song's title and refrain of “Any day now, any day now, I shall be released.” But, looking at the diverse community David had built for himself, the first verse particularly resonated for me, and will for a long time to come: “They say everything can be replaced/They say every distance is not near/So I remember every face/Of every man who put me here.” To me, these lines reflected the preciousness of life and all its relationships, both for our patients and for us, the clinicians who are privileged to care for others every day. Although few people could hold a candle to David's uniqueness of spirit, struggle, and flair, I like to think that we can and should remember the faces of all our patients and families. Even those whose journeys are more private, if not lonely, we must take something away from all our interactions and hopefully always remember that is they who have put us here, they without whom we would not be.