“Shut your eyes, Marion, don’t look at it no matter what happens.”
—Indiana Jones, Raiders of the Lost Ark

I had just started my residency in Burlington, Vermont when she started having symptoms again. She was to receive her treatment in Rochester, New York, which meant we were apart most of the year. I had been planning to propose in October, but now all plans were out the window. Despite the fear that swelled inside, I made sure to propose before she started chemo, to show that I would be with her no matter what.

When she was diagnosed, I did what any doctor or medical student does when they don’t know something: consult UpToDate. UpToDate.com is a database for evidence-based information for nearly all medical conditions and their associated presentations and treatments. Unfortunately, I did not find comfort in the “Treatment and Prevention” page on PTLD.

• “There is a paucity of data regarding management.”
• “There is a paucity of data regarding the efficacy of different treatment options in this patient population.”
• “There is a paucity of information concerning mortality of patients with PTLD.”

Well, shit. This was less than helpful. As frustrating as this was, I came to find that knowing more did not ease my anxiety.

UpToDate is not your friend when your loved one is sick. You will drive yourself crazy looking through it hoping to find answers. It’s akin to looking up symptoms on WebMD.com, but more detailed. Throughout the year, I searched many things, some with the hope to learn and some out of paranoia. Among those were PTLD, side effects of brentuximab, neurotoxicity of ifosfamide, epidemiology and clinical manifestations of Bartonella, nephrotoxicity of ganciclovir, CMV, EBV, immune reconstitution inflammatory syndrome … the list goes on. I realized, too late, that my frantic UpToDate doom-scrolling was not going to change anything.

There were providers with much more knowledge and experience than me taking care of her, but it was still hard to let go. I had only just started off as a doctor after all. It worsened my already enhanced anxiety, reading all the things that can go wrong and the statistical probability that it could. For me, the more I knew, the worse it made me feel.

Ignorance is bliss, and I found myself comparing the situation to reading the news. Do I want to be informed and unhappy about the world, or do I stop reading the news and be blissfully ignorant? Doctors are driven by the need to be informed. We are always asking questions. How do you feel with the new medication? What’s the pathophysiology of a disease? Is this journal article statistically significant? In Doctor in the Family or Family Doctor? Dr. Julia Bisschops says “the worries a health care provider has may be slightly different because they are based on  cases they may have experienced in the past or research they may have read.”

I had learned and seen how so many things could go wrong and I didn’t want anything to be missed. I wanted to feel like I was on top of everything. Perhaps I was searching for a feeling of control or a way to exhibit some usefulness when I felt so helpless.

The first time she was admitted to the ICU, I wanted to know everything that was going on. As I was starting my six-hour drive from Burlington to Rochester, I was asking the nurse on the phone how her kidney function was. I would sit in on rounds when the team came by. I asked about her labs, what the plan was, and made corrections on the timeline of events. What about this? What about that? What’s her urine output been like? Aaaaahhhh!!!!!! The worst was hearing what her lactate was. It feels like such a clear marker that things were not going well. I winced every time I heard her nurse say it was elevated.

“Doctors are unfailingly human,” says Dr. Kate Robins-Browne in Recognizing Illness in a Loved One. “We are as vulnerable as other people wanting to avoid the truth of a loved one’s illness and seeking to shield them from harm.” Working in medicine provided me the confidence in being honest, even if it broke my heart to do so. This is where I occasionally butted heads with Meg’s family. They were her protectors and had been so for 32 years, of which I was only present for a fraction. They had seen her through every challenge she had faced so far and felt she didn’t need any bad news that would stress her out, especially in her emotionally fragile state. From my perspective, I wanted her to know the truth so we could have the hard conversations before it was too late. Meg, keeping a positive outlook, didn’t want to talk about a wedding until she was better, and I wasn’t going to push her on it. Sadly, it felt that the conversations of getting married and hospice were delayed to the point where neither could be effectively accomplished.

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“Do not try to be her doctor.”

Meg was in the emergency department for hypotension and her third liter bolus was getting hung. I pestered the residents and attendings to be cautious because the last time she was in the hospital, she went into acute renal failure and got volume overloaded, leading to a prolonged intubation. The emergency medicine attending did the kindness of using an ultrasound probe to show me that the inferior vena cava was collapsible, and yes, she still needed lots of fluid.

While we were alone in the emergency department room, the automatic BP cuff spit out a reading of 65/38. I frantically tried to untangle the cords from her gown and reset the cuff to get another reading. During this process, her nurse came in. The second read was 88/54, which was stable from where it had been. I felt some relief, that even though her blood pressure was still low, it had not dropped further. “I can’t do this!” I said through sobs. “I can’t keep worrying about every blood pressure reading!”

“You’re in the medical field, right?” The nurse asked. “I’m sure this is really hard.” “It’s so much harder,” I said softly, “knowing more has been a burden.”

I spoke to my brother on the phone later that day. He was in the last year of his anesthesiology residency, and he had spent a lot of time in the ICU. I broke down on the phone when I told him what happened earlier and how I was overthinking everything with Meg’s care.

“You can’t hold yourself responsible for what happens,” he said. “I see family members in the medical field all the time, and they fixate on things and try to micromanage. I implore you to take a step back. Do not try to be her doctor.”

To quote Rodney Norman: “When you are focused on the wrong things, it can be like trying to change the weather instead of preparing for the storm. […] learn to focus on the things that you have control over — not the things you don’t.” While Meg was hospitalized, I had been focusing on all the details that I had no control over. It makes you feel powerless when there’s nothing you can do, but you must remember, that’s not what you’re there for. You need to be the love and support, not the data collector.

My brother was right, I would absolutely fixate on things. How much fluid is she getting?  What’s her urine output? How has her blood sugar been? Can a dietician come talk to her about protein intake to help her albumin?! Again and again, I would be asking the nurses and doctors questions that I didn’t need to trouble myself with, and it was never what Meg wanted me to do either. She didn’t want me to be her doctor and would often glare at me if I was asking too many questions.

From my perspective, I felt that I could use my knowledge and experience to advocate for Meg in a way that she or her parents could not. Even more so when she was delirious or unconscious.  I would be left sitting alone at her bedside with my thoughts swirling about what was happening and what could happen. I would suggest medications that might help with sleep or anxiety or voice concerns if aspects of her care didn’t make sense. “She needs to be on an insulin drip if she can’t use her pump!” I exclaimed to the poor psychiatry resident rotating through the ICU.

I took my brother’s advice and tried being more hands off. Meg would still catch me staring at the monitor displaying her vital signs. “Stop looking at them” she would tell me out of frustration. It was certainly a better approach to be less involved. I didn’t need to stress about every aberrant electrolyte or what her creatinine was doing. I stopped myself from listening to rounds, reminding myself that this is not my job. I am Meg’s fiancé, not her doctor. In Caution Ahead, Dr. David Alfandre recounts a similar feeling when his son becomes critically ill:

“I eventually recognized that being a physician while having a son so sick was a challenge that I needed to reconcile in order to be the father I deserved to be. I wanted to just be my son’s dad, and have the doctors explain things to me like I had no medical knowledge. My solution started with deliberate ignorance, which was a difficult choice for someone in a profession dedicated to knowledge acquisition.”

This of course was not without some drawbacks. Some things would take me by surprise. One day her nurse had told me her platelets were 20,000 (normal range 150,000-450,000/uL). “Twenty?” I shouted. “When did that happen?” Her platelets had been trending down over the past few days and I had no idea. What I realize now is that knowing this number doesn’t change anything other than create more stress. My internal medicine training had ingrained in me that this was my duty, but later realized I was not responsible for trending daily labs or trying to fix them. It was hard to turn that part of my brain off.

Having medical training can be valuable when used properly. Dr. Katherine Gold states “the best role is to be an advocate for a relative or friend who is ill — for example, to provide information or explain the condition to the patient, or participate in the decision-making process if the patient wishes, or perhaps speak to the patient’s physician if the patient is comfortable.” Although I had the best intentions with making sure Meg was getting optimal care, I often overstepped in ways she did not want me to. Dr. Jessica Turnbull, when referring to trying to care for her uncle, “felt [she] was half-committed to each identity, that of niece and that of doctor, and not performing either well.” I found it to be a fine line to walk and made many missteps along the way.

There was one day I was glad to be a doctor. One morning, she was in 10-out-of-10 pain, but she was hypotensive so her team wasn’t giving her any opioids for fear of dropping her blood pressure further. They were also hesitant to give her fluids because of her kidney failure, so nothing was being done about either problem. When her mom told me what was going on, I rushed over to the hospital and told the providers that she was going to end up in the ICU if they didn’t do something soon, which led to some failed temporizing measures and an eventual ICU transfer. I felt so angry that nothing was being done and that I was put in that position. How long would she have been left to suffer if I had not said anything? How could a cancer center leave a patient with untreated pain? I was trying harder to not be her doctor and it wasn’t my job to direct her care.

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“Well, I know what I’ve been told, you gotta know just when to fold. But I can’t do this all on my own. No, I know, I’m no superman.” —Superman, Lazlo Bane

When Encanto’s “Surface Pressure” and the theme song from Scrubs feel like they are nailing your current mental state, you may want to reconsider what you’re doing. I had just transferred to a new residency program to be closer to Meg at the start of my second year, and I was desperately trying to learn the new system, get to know the new residents and faculty, and generally try to get my feet under me.

I was on a gastroenterology elective while Meg was having significant gastrointestinal symptoms. Meanwhile, her parents both had COVID-19 and couldn’t come help her while I was at work. I called Meg to check in on her one afternoon and she told me she was feeling dizzy, in pain, and really scared. After letting my attending know I had to leave for vague reasons, I quickly left the hospital to pick up Meg from home to rush her to her back to the same hospital for an urgent appointment and some IV fluids. I was feeling so strained and told my dad on the phone that “I can’t keep doing this. This isn’t sustainable.”

“Under the surface, I’m pretty sure I’m worthless if I can’t be of service.”

This wasn’t the first time I felt the crushing weight of my responsibilities overwhelm me. Earlier that year I was in the midst of my two-day COMLEX Level 3 exam in the early spring of my intern year. I had been over-studying, as I had been conditioned to do for Step/Level 1 and 2. My faculty research advisors were expecting an abstract draft. Moreover, Meg was had been feeling particularly lousy the past couple weeks, but I could not help her since I was seven hours away. I was still determined to continue with do some practice questions despite working long hours on the inpatient oncology service (of course it had to be oncology), but by the time I sat at my desk around 8 p.m., I started falling apart.

I think it was the first time I had a panic attack. At first, I tried doing a guided meditation (in through the nose, out through the mouth), but started breaking down further, unable to take deep breaths when the tears started flowing. Fortunately, I managed to get my sister on the phone. After letting her know how poorly things were going, she gave me the best advice: take the day off tomorrow.

“Who am I if I don’t have what it takes? No cracks, no breaks, no mistakes. No pressure.”

Could I really do that? Take a “mental health” day? I always felt guilty about needing others to cover my shifts, even if I had to do the same for them. In Moving Through and Moving Forward, Dr. Suzanne Minor describes this feeling perfectly: “It didn’t feel acceptable to not work just for feeling sad. What? Was I going to call in sad? Yet, I couldn’t work when I was bawling and incoherent. I also didn’t want people to know that I was that sad, feeling defenseless and entirely helpless in my sadness at work.”

The mandatory well-being survey gave me a score of “extremely low,” indicating a very high level of distress compared to most other U.S. residents/fellows. I didn’t need the reminder. I had spoken to a counselor a few times about my situation, but I was never sure if it was helpful.  Sometimes it felt more stressful to find time in my busy schedule to set up an appointment. I rarely had free time from 9 a.m. to 4 p.m. on weekdays to make that happen. I tell my patients that it would be beneficial to talk to a therapist, so I would be a hypocrite if I didn’t do the same. If only it was that easy.

During the year, I had spoken to a few individuals who had lost their spouses to cancer. I was desperate for insight on how to navigate this situation, but no personal experience is the same.  Unlike with residency or boards, there was no handbook with tips on how to get by. One particular question I was hoping to get answers to, was how to know when to stop working.

One of my attendings who had lost her husband to pancreatic cancer, told me that there comes a time when you know you just can’t work anymore. In addition to worrying about creating a delay in my training, I was also stressed about how I would pay my rent if I was on leave. How will it affect a fellowship application if I’m off cycle? It was another thing on the long list of gray-areas I had to deal with.

Meg always wanted me to stay on track with as few interruptions in my residency as possible. She would tell me that I needed to finish strong, think about our future, and make sure I can get into a good fellowship program. This was echoed by both her parents and mine. Whenever I tried to bring up the idea of taking a break from work, I was often met with encouragement to keep going. This certainly was not malicious in any way, but they may not have been able to recognize how much turmoil I had on the inside.

“But wait, if I could shake the crushing weight of expectations would that free some room up for joy or relaxation, or simple pleasure? Instead, we measure this growing pressure. Keeps growing, keep going…”

Residency doesn’t leave us with much free time on our hands. We cherish our “golden weekends,” which for those with normal jobs, are uninterrupted two-day weekends that are few and far between. You learn to be efficient with your days off when you only have one per week. Any grocery shopping, errands, laundry, exercise, and maybe the rare social activity, would often all have to be accomplished on the same day. So, when do you find time to relax? When you spend your vacations and long weekends traveling to see your sick fiancé, there really isn’t much to be had.

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“It’s funny, isn’t it, the things that matter? The truth is that none of it matters, and the truth is that it all matters tremendously. It’s a wonder any of us get out of bed at all. And yet, we get out of bed.” —Bojack Horseman

Things intensified during Meg’s second hospitalization. Thankfully this time it didn’t require intubation, but her general condition was worsening. This was evidenced by persistent severe pain and weakness, exacerbated by failing kidneys. She had not been tolerating chemotherapy well the weeks prior and the difficulties were mounting. She was now admitted to the same hospital where I was working since I had transferred to the new program at this point. I would work all day, walk over to spend a few hours in her room, then go home and repeat. It was misery.

The attending oncologist was rounding late one Thursday evening, which gave me an opportunity to speak to her directly since I was at work most of the day. I was still hopeful that things could turn around and we could at least get her home soon, so I wasn’t quite prepared for what she had to tell me. We had reached the point that there were no more chemotherapy options, and things appeared to be getting worse. The team was planning to consult the palliative medicine team in a few days to start talking about the next steps.

This had always been my worst fear since the diagnosis. When I was involved with goals-of-care discussions with patients, I would think in the back of my mind if and/or when this this conversation would happen with Meg. We had been hopeful in the beginning despite the uncertainty of her treatment options. To finally hear that there was nothing left to be done was indescribably devastating.

Despite the crushing news I had just received, I still went to work on Friday to finish out the week. I hoped that perhaps work could be distracting enough to take my mind off things. It was foolish to think so in hindsight. “The key to being happy isn’t a search for meaning, it’s to just keep yourself busy with unimportant nonsense.” Friday morning, I was in a daze. The cardiologist I worked with that day must have thought I’d never seen a patient before.

Zugzwang. The time had come that I couldn’t keep going to work. Not only did I need to be there for Meg, but there was no way I could continue to do my job well. My training would suffer (more than it already had), the interns on my team wouldn’t get adequate supervision, and most importantly, patient care would be negatively impacted. There was too much at stake to phone it in. Would I want my doctor to be practicing medicine in the same mental state? On Monday morning, I told my program directors that I would be taking a leave of absence from the program.

The question of when to stop working plagued me for quite a while. In my mind, taking a leave of absence was like admitting defeat. There was also fear of disappointing Meg and the rest of the family. I really didn’t want to let her down. I had gone through so much to make the transfer happen and it felt like everything was falling apart too soon. They had made many accommodations for me, and I didn’t even make it for two months. I was carrying around an enormous amount of guilt that I didn’t need to.

“I had been in crisis mode, doing what needed doing,” says Dr. Suzanne Minor. “I learned to stuff sadness, as needed, to function, especially in residency at the county safety-net hospital. Working 36-hour shifts with very sick patients, emotions became superfluous […] Even though feeling feelings was actually self care, it felt indulgent, though in retrospect was entirely necessary.”

As a surprise to no one, taking a leave of absence was the right decision. The pressure to keep going to work, to keep pretending that everything was fine, was now gone. I had room to breathe, and I no longer had to feel guilty about not seeing Meg while I was at work. There was now time to (attempt to) catch up on sleep and practice the elusive concept of self-care. It made a significant impact on my well-being, at least temporarily.