Caught Off Guard

Caught Off Guard

Don S. Dizon, MD, FACP, FASCO

Sep 11, 2018

When I think of my life, I think about how many special people I am fortunate to be surrounded by—my family, my partner, my kids. They are my heart. There are also friends that have stayed with me, some since I was the shortest kid in first grade to the shortest medical student in my class to the shortest resident at Yale… well, you get the picture. Throughout my life I have connected with a few individuals on a deeply personal level, and when that happens, I’ve walked away with friends of a lifetime.

Recently I was asked to participate in a CME activity for Physicians’ Education Resources (PER) on doctor-patient communication around breast cancer, specifically as it affects premenopausal women and their loved ones. The aim was to show how truth, empathy, and hope all play such an important role in the oncology relationship. It required me to interview a woman diagnosed with breast cancer at a young age, and PER had asked if I had anyone in mind that could do this with me.

Because of some of the work I have done nationally with organizations like the Metastatic Breast Cancer Foundation and Living Beyond Breast Cancer, I’ve met phenomenal women, some of whom came to mind easily. I had reached out to several of them, but the time was not right for them; others I could not get in touch with. Making it more difficult, I had only recently started my new role at Rhode Island Hospital, I did not yet have a patient that fit this particular bill. Coming up empty, I spoke to one of my dear colleagues about the opportunity, wondering if anyone came to mind for her. She lit up immediately: “I have the perfect person for you.”

And that’s how I met Anya. She was described to me as a poet and professor from Georgia, diagnosed with inflammatory breast cancer, and living with metastatic disease for the past 8 years. “She’s eloquent and down to earth and she feels passionately about how doctors should talk to patients,” my colleague said, “and her husband is just phenomenal.”

I reached out to Anya and, after hearing about the opportunity, she agreed to do the interview. Weeks later, we were in a studio outside of New York City. Anya was there with her husband, Andy. We sat down on the set and started to talk about the agenda and the areas that the team had wanted us to cover. Soon it felt like I was sitting with an old friend. She recounted her diagnosis, made while pregnant, and how there was never a doubt in either her or Andy’s mind about keeping their baby—their son was a lifeline for both of them after the diagnosis. She described the false reassurance of hearing “don’t worry… you’re too young for breast cancer” only to learn 2 weeks late that it was breast cancer. Andy spoke as well: about going to the internet to learn about her diagnosis, of heaving uncontrollably, and deciding, he said, that “I could not watch her die.” The only thing that calmed him was Anya herself.

She spoke about treatment and side effects, of what we talked about as clinicians, and what we did not. It turns out that there is a difference between being patient-focused and being person-focused. She recalled how her team asked her questions about medical treatment and about side effects. Yet, no one asked her about her pregnancy and how that was going. She dealt with this by learning who to talk to about what topics; her doctors were there for medical information, the nurse practitioners and nurses for “the warmth and the family feel” she needed, and an online community of young women going through treatment for emotional support. She struggled with the physical manifestations of cancer, and with how people responded. “I did not want people’s pity, explanations of why this happened, or positive attitudes,” she said. “It was painful for someone used to being a woman to all of a sudden be a patient.”

Anya recalled life in remission with a future full of uncertainty. Stopping adjuvant treatment was so difficult for her; reassurance had come with those every-3-month visits. She learned how to “focus on the present” and to “find the grace and the joy in life,” something she found extremely difficult.

She also recalled how she was diagnosed with metastatic disease after her 5-year course of endocrine therapy. “There’s a horrible drop, an intense fear, and then a normalization. If you don’t want to go completely insane, you have to find a way to live with this disease,” she said. She spoke of living with metastatic breast cancer and how she sought to live every day “trying to find the joy in a life that was painful.” She also aimed to break the stigma of palliative care. “Do not be afraid of it, don’t be ashamed,” she told herself. “You’re not weak, you’re not losing. You just need help, and that’s okay.”

We spoke for hours, and at points I forgot we were being filmed. It was an engaging and honest conversation and at the end, I felt I had made new friends. On my way home I googled Anya Silver and discovered I had been in the presence of someone truly special. In addition to an academic and a poet, Anya was also a Guggenheim fellow for her poetry and she had published four books. She was an advocate and served on the board of the Inflammatory Breast Cancer Research Foundation. I was so excited to learn about this and reached out to her to come to Brown for a special day where we could combine art and medicine; I even reached out to our English Department to let them know of the invite. She agreed to come and we set a date for October.

Unfortunately, life carries no guarantees. Less than a month after our meeting, Anya got very ill and she died. The news shook me hard. We had just met and I had already envisioned a burgeoning friendship. Brown would’ve been just the start. But, that wouldn’t be possible now. Even as I write this, the shock that Anya is dead stays with me. I am just thankful I met her once, and that together, we hopefully produced an enduring medical teaching event with important lessons:

  1. Compassion still has a place in precision medicine,
  2. Patients and their caregivers respond to our kindness as well as they do to our honesty, and
  3. Cancer never defines any one person—the patient is a person, despite cancer, and she deserves our respect.

Rest in peace, Anya.


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