I didn’t expect you to pick up the phone right away. “I’m scared,” you say. “I’m in pain.” When I ask how you plan to get to your appointment with the surgeon in five days, you reply with a determination that roots into my mind. “I’ll be there. Even if I have to walk the whole way.” (I eventually pull myself together and figure out how to call a taxi for you.)
The morning of your appointment, my fingers are mindlessly clicking through anatomy flashcards, brain too occupied by how I’ll soon be meeting you to focus. The phone rings—you. I rush to the hospital entrance, eyes searching each car that passes for you, or what I imagine you to look like based on your medical record. Sixty years old. Black. Female. Breast lump. Cocaine user. Smoker. Ex-opioid user. These labels don’t help much because you identify me first (by the red shirt I told you I’d wear) and start waving at me from across three lines of cars. When you finally step out of the cab, you immediately wrap me in a hug. First a name in an email, then a fearful voice on the staticky phone, you are now a surprisingly warm human.
We spend hours waiting to see the doctor, which gives me time to take in your graying hair pulled into a coarse bun, your shirt with an “XL” sticker still on. I explain to you that I’m a months-old medical student, a smile tugging at the corners of my mouth as you say how proud you are to be my first patient. You tell me about your imp of a granddaughter and the fried chicken you plan to make for dinner. Our conversation is interrupted by a call from your son, your “everything.” Fifteen minutes earlier, you were shedding angry tears because he wasn’t picking up the phone, swearing you’d ignore him if he tried to call you back. “How could he go out drinking last night when he knew I was seeing the doctor today? He needs to get his life together. But I guess kids learn from their parents, right, Devon?” The bitterness, regret, even self-blame in your voice hang heavy in the air, leaving a space I don’t know how to fill. But when your son does call, you answer right away, your chatter comfortable and excited. You end the call with an “I love you.” Soon, you drift off into a well-deserved nap. Pain robs you of sleep most nights, I know, so I am glad to hear your soft snores, even as I sit quietly in this uncomfortably rigid chair, still unable to focus on my flashcards.
The doctor is in and out in a whirl of questions that can’t be answered. “Is it cancer?” you want to know. He needs a better look at the mass, so you’re scheduled for an MRI and biopsy in two weeks. As he steps out, you catch his eyes and tell him you’re proud of him, a fine Black doctor. “There aren’t a lot of us, but we’re here,” he replies softly, chuckling as you shout down the hallway at his retreating back that “this is Devon and she’s in school to become a surgeon! I’m her first patient now, and I’m going to be her first patient when she becomes a doctor!”
Caring for you doesn’t stop when I wave goodbye to your diminishing figure, safely in the cab home and already talking the driver’s ear off. Maybe I should have expected it, but getting you the pain medication you need is a frustrating battle—one that I’ve heard of before and lamented about in class discussions, but never had to fight myself. I feel like a fool emailing the physician’s assistant only to hear that “the prior authorization should have been done already,” then calling the pharmacy (“it just needs waiting”), and asking the doctor’s office yet again (“go back and check with the pharmacy”). At every turn, I am hyperaware that this painfully convoluted back-and-forth has likely been complicated by your “polysubstance use disorder.” Getting your medication to you feels impossible, yet giving up isn’t an option when each call to you opens with the same anguished words: “I’m in pain, Devon.”
Even when this insurance mess finally gets sorted out, my stomach drops yet again when I call you one Saturday, and you say you’re in the hospital, have been for a few days already. I haven’t checked your chart since Thursday, shamefully relishing in the few peaceful days of no responsibility. When I realize you are scheduled for your MRI and biopsy early next week, my mind frantically tries to wrap around the logistics of getting you a taxi to the appointments if you’re still in the hospital. I’m frustrated with how none of your doctors seem worried about the delay in your care if you were to miss the biopsy, leaving me, a first-year medical student, the only one to advocate for you. I send email after email trying to get this solved. But I don’t know how to reach your hospitalist, so I call you to ask how you’re doing and when you think you might be able to leave the hospital. You explode over the phone, triggered by my repeated use of the word “discharge.” “Why do you keep saying discharged? I can’t leave the hospital. There’s no plan for me. My pain isn’t controlled. You’re not listening to me. You’re not doing what’s best for me.” And you hang up.
You’re right. I called you with my own agenda, didn’t wait to listen to what you wanted. I’ve failed you for the first time, and you called me out on it. I send you a long text of apology, and you immediately call me back in tears. I don’t feel better though. Especially when I check your chart again in the afternoon and find you’ve left the hospital against medical advice, just when the doctors were starting to put together a plan (my fault for meddling?), and now it’s on me to get you to your imaging appointment tomorrow. I text and call to let you know I’ve set up the taxi, but I sleep lightly that night, waking up every few hours to see if you’ve texted back. In a haze, I even dream that you’ve responded to me. When I roll over and blearily check my phone, my notifications are empty.
You do show up to the MRI, but quickly reveal that you had been drinking alcohol beforehand to calm your nerves. Still, the deafening noise and beeps of the machine are too much and you tearfully beg to stop after only ten minutes. Shaking her head, the tech tells us they didn’t get the images they need. I can hear your frenzied muttering from behind the dressing room curtain that you’ll never do this again. You rummage furiously in your purse for a cigarette and take deep, desperate breaths of the smoke the moment we step outside. I pull out my phone to let your doctor know that the MRI wasn’t finished in case the plan for surgery tomorrow changes, but you stop me, angry that I’m doing what I want, not what you asked me to do for you. You want to show up tomorrow and argue with anyone who says you can’t get your biopsy. You say that I’m not really on your side. Once again, you’re teaching me how to be an advocate.
I spend yet another restless night wondering whether you’ll actually come to the biopsy tomorrow morning. Worse, I wake up to a 2 am text (real this time) telling me you’re nauseous, your mouth tastes like metal, and you don’t think you can make it to the surgery. Helpless, all I can do is keep calling you, stepping out of small group every five minutes as you go through cycles of wanting and not wanting to come to the hospital. You eventually do arrive, even if an hour later than planned. Inside, I’m nervous because I’ve been conditioned to never make the doctors wait, but I try not to show it to you, and I breathe easier when no one comments on our tardiness. (At the very least, we earned this grace from the three hours we waited for the doctor last month.) And miraculously, the surgeon is satisfied with the few MRI sequences they were able to capture yesterday. He even thanks you for doing everything he asked you to.
To every nurse and doctor that we meet, you insist that I be allowed to join you in the pre-op area, and then that I come to the OR with you too. (You find it hysterical when confused providers ask how we’re related.) You’ve never forgotten that you’re my first patient and that all of this is a new experience for me. Because you’ve repeatedly advocated for me to be present, I am gifted the privilege and turmoil of watching you break down sobbing for your long-gone mother, yet a few minutes later confidently tell the anesthesiologist about the recreational drugs you took recently in a desperate attempt to stop your pain. (“I have to be honest, right? It’s my health on the line.”)
I walk with you to the OR. At first I stand awkwardly in the corner, but I walk closer to hold your hand when I hear you moaning my name. It’s strange yet sweet that you’re depending on me like this when we were complete strangers less than a month ago. Soon, they put you to sleep. It’s jarring how quickly you turn from a person to a body. Unclothed, you seem raw, helpless, undignified. I feel like a trespasser and wish I could go back to a time before knowing you in this too-corporeal dimension.
After the surgery, you come into consciousness groaning, thrashing, yelling about a pain you’ve never felt the likes of before (“the surgeons must have messed something up”). On the border of the commotion, the anesthesia resident, arms crossed, argues with a nurse about her attitude (I too noticed the nurse’s obvious eyeroll the moment she stepped into your room). Although I’m supposed to be on your side, it’s hard not to relate to that nurse’s frustration when you’re making expletive-filled personal attacks on me for not listening to you, not telling everyone the oxycodone they’re trying to give you is wrong. Yes, I was there when you told the surgeon earlier that you know Percocet works for you. I was also there in the OR when he clearly told the resident to order you oxycodone. (But is it really important whether I’m objectively right, when you’re in pain? I want to defend myself, but stay silent.)
Your moans grow louder, more violent. I am flashing back to Jahi McMath, another Black girl whose post-operative pain wasn’t believed by healthcare workers. Her story ended in brain death. A pit of dread churning in my stomach at my inaction, I feel as though the same story of dismissal is replaying before my eyes, even as I watch each person that files into the room to talk to you about your pain: nurse, surgery resident, anesthesia resident—each one without the authority to give you what you want (need?) without first speaking to the attending surgeon. Their inability to provide an immediate solution fuels your frustration (and leaves me wondering whether the academic hierarchy really serves patients). Each one tries to explain that Percocet is the same as oxycodone, just with another painkiller pill added on. But this logic is futile against your pain-fogged mind, still latched desperately onto the visceral memory of getting a small yellow Percocet on the street and the sweet analgesic relief that followed.
Miraculously, you’re able to recognize and flag down the attending as he passes by. He too tries to convince you that Percocet and oxycodone are effectively the same, but gives in quickly, seemingly not wanting to prolong the conflict, and prescribes the Percocet. (He, unlike the others, has the power to grant your demands and thus not face your wrath.) Watching you advocate for yourself, I feel a shift in our relationship. You aren’t the powerless, voiceless patient I thought you were. You don’t need my help as much as I thought you did. You don’t need me to respond to you with what I think are logical answers. You just need me to listen and nod.
Your godmother drives up from the next state to pick you up. Is it wrong to feel a rush of relief when she pays for your first few pills out of pocket so you don’t have to wait 24 hours for the prior authorization (and I don’t have to figure it all out tomorrow, during exam day) and says she’ll be driving you home (so I don’t have to wait for the taxi with you)? Percocet in your system, sober, you are serious when you tell me you appreciate me sticking with you, even when you’re “mean and drunk.” I am grateful for your words. They make my time feel worth it. But they don’t erase the weight of the accusations you slung at me in your half-conscious, delirious state. Those still sting because they hold some truth. But I know if I take everything personally, I won’t survive this career.
A week later, I get an email that you’ve been called about your biopsy results. Breast adenocarcinoma, stage 3. Even though I know you had your suspicions, I can’t begin to imagine how you felt receiving that diagnosis over the phone. It’s a whole day before I can muster the courage to call you and assure you I’ll be there at your oncology appointments that week. The visits are somber, tired, teary, yet I leave feeling assured that the oncology team will do their best for you. I’m both glad you have a real social worker on your case now and guilty for feeling relieved that I’m no longer responsible for coordinating every puzzle piece of your care.
Checking your chart becomes my new hobby. So many of your doctors’ treatment decisions are motivated by your history of substance use. They don’t trust you to take chemotherapy pills at home and don’t want you to have a subcutaneous port. I feel a little sick thinking about how the medical team talked about you in their private discussion rooms. How, if I hadn’t known you, I might have talked about a patient like you. I wish you didn’t have to be branded, labeled as a drug user at every turn of your treatment, even as I recognize the complexity of the doctors’ concerns and fear their truth.
I watch from a distance as you repeatedly cycle in and out of the ER, pain never controlled. I read the notes documenting how you’ve cursed out yet another nurse, missed more chemo appointments, and admitted you’re back to your “old ways,” no matter how many times and how earnestly you’ve expressed to your doctors that you want to stop drinking and using drugs. Guilt ever rising, I constantly wonder if things might be different if I was still actively managing you, bothering you at all hours of the day about showing up to your next appointment. But honestly, it’s too hard to pick up the phone and call you. I know I’m selfish, but I’m not ready to return to the sleepless nights and heartache that come with caring for you. And I need to accept that I can’t control your every action, force you to get treated, and fix your every problem. Even if I’ve failed you, I am not a failure. You are brilliant and destructive, the strongest advocate and greatest victim of your circumstances, a cruel, constant reminder to be better and listen. You’re my first patient.
Note: Patient details and narrator’s name were changed to protect patient privacy.
Image by Grace Wu, an MS1 at the Perelman School of Medicine.
