Anticipatory grief and closure

This was originally presented at the Oncology Nursing Society Congress in 2022. It is a story about a personal patient and friend.

I found a card from him the other day and my breath hitched. Then I remembered how annoying I thought he was the first time I heard him.

It was day two of a phase I clinical trial for anal cancer, and he and his friend sat down in a room alone with me. My desk was set so my back was facing him, and it seemed that every sound that came out of his mouth was a complaint. He was slightly rude to my coworker who had him that day, and I found myself wondering how long he’d willingly drive the three hours to the clinic if he seemed to dislike us so much.

I don't remember when I was first assigned to him, but I do know that I was not happy about it. Because of my fastidiousness, I was the one who was always given difficult patients—an unofficial position but one that truly did exist at my facility—so he became mine. He kept coming and we kept talking, and we began to recognize that we had a fair bit in common. We started looking forward to seeing each other and having our deep conversations away from everyone else. I learned about his life and the difficulties he'd had, talked about psychology and music, and we even debated topics forbidden in the South: religion and politics. (We agreed on both.) His smile was easy and his voice comforting. He was an active therapist, and I imagine his patients loved him.

He ended up doing well on his study and happily came to us every two weeks. But his platelets were regularly unfriendly, and he left emptyhanded instead of with a cool bag full of vials and needles more often than either of us would have liked, but this never upset him. As with most times in oncology, however, his disease found its way around our treatments.

One day, he reported having a headache, so we sent him for a magnetic resonance imaging (MRI) scan. I told him that if I called to share the results myself, it was good news, but if I called and said his doctor needed to speak with him, that was a bad sign. On my way home when I received his MRI results, I turned around. I ran into him in the elevator instead of calling him, and my tears told him who he needed to talk to that day.

He disappeared from our facility for a while to get stereotactic radiosurgery (SRS)/stereotactic body radiation therapy (SBRT), and they tried to get him enrolled in another study, but those platelets continued to decline. He was ineligible for the study but not particularly interested in standard-of-care options.

I looked at his CaringBridge page last year, and he had posted about the last time we saw each other. I cried as I read about how we silently sat knee to knee, not particularly knowing what to say because we knew what was going to happen. He silently gave me an envelope and said to read the note later. He'd given me thank-you cards before, but this was the first time he'd written an entire letter.

Thankfully, I didn't open it until I got home.

          Dear Allison,

          A simple card with a huge message: thank you. I struggle for the words to express how profoundly grateful I am for your care and attention to me. The reality is that I just am—so grateful, that is.

          Your dedication, patience, compassion, awareness, humor, and knowledge have all been so evident and authentic in the two years and three months I have known you. Thank you for choosing me!

          I have no idea (only God does, maybe) what lies ahead, but my hope is that it includes sitting in the audience listening to a wonderful concert in which you are singing!

          Allison, may you continue to bless others as you have blessed me with your many healing gifts.

And then the final line, the one I have tattooed on my arm in his handwriting:

          Peace be with you and all those you care for and love.

          Namaste—

          Don

He died seven months later, but we never saw each other again, separated by an entire state. Preoccupied with morning sickness during pregnancy with my second son, I didn't learn about his death until I'd already missed his funeral. I loved reading the notes left on his obituary webpage—he was loved by so many. I sometimes think that I should go for a long drive and visit his grave, but I don't particularly know what I'd accomplish because I already feel closure.

His note hangs in my cubicle where I can see it all day and remember why I continue working in cancer research and drug development. When times are difficult, I can look at his best wishes on my arm. Patients appreciate the words woven with ginkgo leaves, a symbol of endurance and survival. I think it may be as much of a comfort to them as it is to me—you don't just randomly get a patient's words permanently etched on your arm; it's something that shows a devotion to and appreciation of the people we help every day. For people worried about feeling like a guinea pig on clinical trials, perhaps it helps lift some of that fear.

I appreciate him every day that I walk into work, even six years after the letter was written. Thank you, Don. Namaste.