RESIDENT REPORT FROM BED 44A
One of our wedding dishes cracked a few days ago. It happened surreptitiously and irreparably, as the dish was being used for normal baking. Recently, I, too, cracked. One minute I was rounding on patients in the CCU, and the next I was answering a phone call from an orthopedic surgery resident who told me an x-ray of my knee was concerning for osteosarcoma. Immediately, the illusion of my perfectly planned life shattered.
Now, I am six months into treatment, 24 weeks from pulling the emergency brake on my intern year in internal medicine. I’ve received five rounds of methotrexate, three rounds of cisplatin and doxorubicin, three rounds of ifosfamide and etoposide, and five fractions of radiation. I’ve been admitted 15 times and had 15 centimeters of my right femur removed, all at the hospital where I should be working as a resident. I’m living the cycles of anxiety, suffering, and hope between treatments and scans that I had just begun to witness as a physician.
“You’re going to be a better doctor because of this,” I’ve been told again and again. Will I? I hope so. I pray so. I want to believe so. But it is hard to find comfort in this, especially when the bad news keeps worsening, doled out bit by bit. Four months ago, I learned I have pulmonary metastases. Then, the news was bone metastases. Then, progression through first line chemotherapy. Surely this is enough to help me relate better to patients. Couldn’t I have just had a false cancer scare, a localized tumor, or at least a complication-free treatment course?
And yet as I’m experiencing firsthand, straightforward is rarely the true patient experience. This is, and the unknown twists and turns can be terrifying and isolating. I had a nightmare a few days ago in which I felt panicked, running alone to catch a flight, afraid I would miss it. I woke up and for a second felt relieved that I’d only been dreaming, but then my real life – my scarier life – came rushing back.
Amid my fear and sadness, though, are many moments of hope, love, and gratitude. People often don’t know what to say, and sometimes well-intentioned words ring hollow, disconnected, or superficial. But other times someone finds exactly the words I need to feel less alone, more at peace, and more hopeful. It takes work. Racing to offer silver linings and positive spins doesn’t help. Joining the uncomfortable space of my suffering does. Meeting me where I am, so we can climb up together, makes all the difference.
Most of the time, it’s my family and friends who reconnect me to joy. I am grateful for every visit, note, call, text, and package. Some of the notes start, “I hope you don’t think it’s weird that I’m reaching out…” I never think that. If there is a good thing about this disease, it’s how it has helped me deepen relationships with my husband, sister, parents, friends, and mentors. I feel surrounded by love.
In this fight for life, I also need to feel connected to my medical team. I need my doctors to know my disease and the newest treatment options. I also need my team to know me as a person; as a resident, wife, daughter, sister, and friend. The moments I appreciate most are those when a member of my care team simply sits down, is present, and offers the unspoken message, “I am here. I see what you’re going through. I will help.”
As an intern, I always aspired to form strong doctor-patient relationships, but I often felt limited by the rapid turnover in the inpatient environment. Caught up in orders, notes, and consults, I imagined the most meaningful doctor-patient bonds were forged through longitudinal relationships built in outpatient clinics. My experience as a patient, though, has shown me I underestimated my potential to connect powerfully with hospitalized patients. Yes, repeated appointments have helped me develop close, trusting relationships with my primary oncologists and surgeon. Having been at my most vulnerable and terrified while admitted to the hospital, though, I now recognize and tremendously appreciate how deliberate and determined inpatient physicians and nurse practitioners use small moments to provide large doses of desperately needed empathy.
During my first inpatient stay, shortly after seeing the haunting images of my initial MRI, I met a hospitalist who saw through my forced smile and rapid reassurances. She sat on my bed and asked if she could give me a hug, and then she held me, telling me to take deep breaths, until finally my breathing became more even and my muscles started to relax. Though I barely knew her, her physical presence was deeply comforting. As my journey has continued, she has become a core pillar of support. She’s reassured me that it’s fine to feel scared and weak even when others say they admire my bravery and strength. She’s reminded me that fearing the worst outcomes does not make them more likely. And when my pain was most acute after femur reconstruction surgery, her voice helped me refocus my thoughts: guided by meditations she recorded on my phone, I would visualize a cool stone pressed against my knee and predictably feel the pulsations in my thigh dampen.
I found out about my lung metastases during another hospitalization. Scared, impatient, and desperate for lost control, I opened my own chest CT report. As I read, I felt ripped from my body. I had finally come to terms with having osteosarcoma, but this thrust me back into the emotions of that first horrible day. I emailed my outpatient oncologists, frantic, and then started pacing the ward floor, trying to find someone to talk to. It was the attending oncologist covering the inpatient service who first provided the hope and relief I needed. He sat at the foot of my bed, and after a deliberate silence, empathically helped me come to terms with the news. I could see it was difficult for him as well and was grateful when he returned after a few hours to help me form an action plan. I needed to feel I was doing everything I could to save my life, and he helped to show me a path.
I was talking with my psychiatrist recently about why I do not want to die. As I explained how much I want to finish residency, pursue my dream career in global health, start a family, travel the world with my husband, and be present as my parents age, we both began to cry. I was surprised by her display of emotion but found it refreshing and affirming. I want my physicians to grow personally invested in my journey. As a physician, I understand the desire to escape the hospital, the need for a break from constant patient care. But now that I live and sleep with this cancer, I selfishly want my team to do the same. I’m terrified my oncologists have grown immune to tragedy. I want my physicians to be as driven by the fear of my death as I am.
I long to get past this and on to being a teaching resident. My first opportunity came in the emergency department when a newly-minted intern arrived to admit me. I was neutropenic and vulnerable, and the intern inexperienced. We weren’t sure I had a fever, so the intern suggested a rectal temperature to obtain “the most accurate reading.” Cheeks clenched, I quickly shot down that suggestion and immediately spat out the list of orders I wanted, giving the intern no time to think. I transformed into the patient from hell.
This is neither how nor what I want to teach. I do, though, want to share. Despite the turmoil of emotions I now associate with the hospital, I still love my career in medicine. If given the opportunity to care for patients again, I will be a better doctor. In the meantime, I hope to share what I’ve learned as a patient with interns like the one I met in the emergency department. I’ve made their mistakes and experienced the same challenges. Now, I want to help them feel what it’s like to be me, understand how all-consuming this diagnosis is, know my fears of losing my independence and being told I’m out of treatment options, and see the list of all I’ve already given up and everything else I’d readily sacrifice for cure. I want to show them how critical their presence is. I need them to know how much their words matter.
I wish my life came with a warranty like the wedding dish that broke. For that, it was easy to fill out a claim and receive a perfect, identical replacement. I can’t do that for myself. I’m reliant on other people to help fix my cracks. I need my physicians to be the hands that work to repair me like a piece of kintsugi pottery – appreciating my history, examining my unique structure, and working patiently to reconnect my shattered pieces with gold.
bowl by Christa
kintsugi lines by Brooke