Two Doctors, One Patient, the Chicago Cubs and a Common Goal

This piece was written together with a friend and colleague Chadi Nabhan, an oncologist and current Chief Medical Officer at Cardinal Health. This was originally published here in The Oncologist.  

The crowd erupts with joy, champagne bottles pop open, and everyone around me is stunned. The Chicago Cubs have just won the World Series for the first time in over a century! I heartily share the exhilaration of others in my adopted hometown, but my elation quickly deflates as my mind wanders back to 2013 and to one particular patient with one particular disease, which showed that the doctor-patient relationship is not limited to the oncologist but often involves others.

The oncologist: The oncologist’s schedule can be counted on to be overbooked, busy, and regrettably, dominated by patients with cancers that are rarely curable. It is not surprising that oncologists, myself surely included, yearn to see a lymphoma diagnosis in their crowded roster of patients. For when we see a lymphoma diagnosis, we immediately hope for a curable one, such as large cell lymphoma, for which the odds of a successful treatment are much higher than those of other lymphomas. I was thinking about this when she walked into my office, unabashedly in full Cubs gear, even down to her socks. Her husband was by her side, in a male version of the same outfit. Hardcore Cubs fans who were getting ready for another hopeful season, until the C word struck. Cancer. She had been coughing for few weeks. Ultimately, a chest x-ray was ordered, after antibiotics failed to improve her symptoms. She had a diffuse large B-cell lymphoma (DLBCL) and was only 48 years old. Our visit lasted an hour; we reviewed the data and I ordered additional tests to stage her disease in order to formulate a treatment plan. A few days later, she walked back into my office with her husband by her side. She was wearing the Cubs attire again, head to toe. I was ready to deliver good news of her earlystage disease when she interrupted, “Just tell me I will live until the Cubs win a few World Series.” I smiled in return and countered, “More than a dozen, I hope.” She had early and curable disease—the cure rate can exceed 80%. I happily explained how confident I was about her chances. I recommended chemotherapy and we reviewed possible side effects, along with how we would treat or prevent them. We both agreed against radiotherapy and I ended our conversation by making clear that our goal was to attain a cure with little disruption to her lifestyle, especially because the baseball season was starting. Time passed, and my optimism, and her smiles, dissipated. She developed fevers and chills while on powerful chemotherapy and was so sick, unable even to watch the Cubs on TV. Her DLBCL was not following my plan and proved unrelenting. I diagnosed refractory disease; the synonyms for “refractory” perfectly summed up my patient’s disease: stubborn, recalcitrant, and unmanageable. I was upset, angry, disappointed, and speechless. This was the disease I should have been able to cure; this was the diagnosis that cancer specialists enjoy treating because of its favorable outcomes. As the three of us sat in a quiet exam room, I with the white coat and they with full Cubs regalia, we discussed options. “We still have hope to cure this,” I explained. I recommended a stem cell transplantation, using her own cells. I was steadfast in my optimism and determined to project confidence. When she asked about percentages, I avoided the answer. I advised her to focus on the mission at hand and to ignore statistics that could easily eclipse our hopeful march forward. More chemotherapy, more tests, more visits, as we forged toward a transplant. Her transplant was thankfully without complications; she was discharged 14 days after her stem cells were reinfused. The nurses cheered her as she exited the hospital and headed home. The baseball season was over. The Cubs did not win, but her Cubs hat remained a loyal guardian angel, covering her bald head and emphasizing her resilience as she fought this lymphoma tooth and nail. On day 45 after her stem cell transplant, I saw her back. She was not feeling well; the anxious looks in her and her husband’s eyes stabbed me in the heart. The three of us knew her disease was back—it probably never went away; here we were again. The room was quiet and we started talking options. We talked about doing another transplant, but this time using stem cells from a donor and not her own. We then discussed the inherent risks, clinical trials, and novel therapies. Before decisions could be made, the options vanished, one after another, because her disease was as remorseless as it was tenacious. A few weeks later, I was preparing to leave for the International Congress on Malignant Lymphoma in the morning—a gathering of researchers, scientists, and clinicians where I would be presenting data on large cell lymphoma. I got a page from the intensive care unit (ICU): my patient had just been admitted through the emergency room with severe shortness of breath. Imaging showed her lungs were filled with “something funky.” The resident offered an opinion that infection was likely and that his team would start aggressive antibiotics. He was maintaining hope, just like he was taught in medical school. The ICU team would monitor, as the fear of sepsis was looming. I hung up the phone but could not get back to sleep. As I stared at my bedroom ceiling, my mind was racing, both sickened and infuriated by the irony.

The intensivist: Every other day is an “on-call” day for the critical care team, and today was one of them. Taking admissions for 24 hours in the ICU is a mixed bag. No one wants more work on top of the already challenging cohort of patients on the service, but the opportunity to take care of patients in the midst of critical illness is a privilege. As an intensivist, more often than not, I haven’t met my patients before they are admitted to the ICU. For the doctors who have known them for years, as the internist or specialist caring for their chronic illnesses, trust and comfort has been built up and earned over time. I rarely have that luxury. My access to patients’ worlds is born out of the necessity of their critical illnesses: the onset of something acute or the progression of something more insidious. I get to ask the most personal of questions, place a stethoscope on their chests to listen to their hearts and lungs, palpate their organs to search for pain or tenderness, and put my hand on their skin to feel how strongly or weakly their blood flows. With this privilege of such intimate and personal interaction come amazing opportunities but also heavy responsibilities. To help heal and comfort. To offer hope and calm, amid the fear and angst that come with critical illness. The charge nurse shouted a quick summary, alerting me to a new patient rolling into the ICU. Late 40s, refractory lymphoma, maybe pneumonia, short of breath. Only four pieces of information, but they painted a picture. No positive mental images came to mind. Angst and foreboding filled my chest. A quick scan of the chart, more words and phrases, and the picture went from bad to worse. “Multiple failed rounds of chemotherapy.” “Status post stem cell transplant.” “Progressive lung infiltrates without a clear diagnosis.” “Increased work of breathing and short of breath.” “Unclear” diagnosis. These were not words you wanted in your medical records. I saw the date of her diagnosis and wondered how she and her husband dealt with that blow. Were they overcome with fear and despair? Did they get angry and defiant? Were they united in their reactions? Did they struggle together or separately, lying awake in a darkened bedroom before the light of dawn? I read about the rounds of chemotherapy, but it didn’t tell me about the nausea, the vomiting, the loss of her hair and weight and possibly her sense of self. I saw the date of her relapse. But it didn’t tell me if she took the weight of those words in stride or if they shook her to her core. All told, these words described a young woman who was running out of options and time. I knew this patient, like many with severe illness too early in their lives, had kept hope near her side. Carried it with her through it all. This is the worst part of my job. Along with the opportunity to help and heal, cure and comfort, I have an obligation to explain the painful truth about the limits of what medicine has to offer. The ICU is often a place where patient and doctor, disease and medicine, are all thrust together. Where hope meets reality. Now I needed to go into the room. Knowing everything. Yet knowing nothing.

The oncologist: Before leaving for the airport, I headed to the hospital to visit her. It was early; her eyes were closed; her husband was resting on the bedside couch. I sat down on a chair by her bed, looking at the monitor’s green lines jumping up and down, showing her heart rhythm. The noises from various monitors punctuated my sullen thoughts. She opened her eyes and offered a gentle smile. She said, “I thought you were leaving today.” “Yes, but I wanted to check on you,” I replied. We both knew her current state was not due to infection, even though we held onto this improbable hope. Hope, however, cannot replace reality; her cancer was getting worse and it was winning the battle. We sat in silence. “Are you ready for your presentation?” she inquired. “Yes, but I will be further preparing on my way there,” I replied. “Good luck and be safe,” she said kindly. I had to leave; I stood up and was at a complete loss for words. What could I say? I wanted to wish her a speedy recovery, but knew that wasn’t even an option. I wanted to tell her and her husband that I would see them upon my return. But would I? I knew deep down that I would not and that saying so would be a lie. I struggled to find the right words. I wanted to keep the hope going, but wanted to be realistic. I wanted to wish her luck, but didn’t know where to find luck when you needed it the most. Our journey was ending. I mumbled something as I exited her room. To this day, I can’t even recall what I said.

The intensivist: I saw the oncologist leaving the room. I felt his anguish as we conferred briefly before he had to leave. The reality is that with growing trends toward hospitalists, a majority of admitted patients will be cared for by physicians they have never met, especially during times of significant decompensation in their health. Most oncologists, however, continue to be an exception. Their relationships with patients are forged in the midst of a life-altering event: the diagnosis of a life-threatening illness, when patients are forced to face their own mortality. At a time when a patient is most fearful and vulnerable, the oncologist has the ability and the mandate to help ease fears and provide a path of hope. With trust and a bond earned over weeks and months of therapy, the highs and lows of treatments, and follow-up scans and labs, they move forward with a common mission and purpose. I often admire the powerful and deep relationships oncologists have with their patients. But I do not envy the burden those doctors carry, one of providing and maintaining hope. I walked toward her room, soon to be the newest doctor in her life. In the next few minutes, I had some basic tasks. Establish a physician-patient relationship. Provide or confirm existing information about her disease. And outline the options for care to her family and her. The challenge was to do this while earning immediate trust, being honest and accurate about the severity of her terminal disease, fighting my own human instinct to present things in the most hopeful of terms, and emphasizing possible options without lingering on how few remained. I didn’t want to hurt her any more than the cancer already had. I wanted to be honest without crushing her spirit. This was where hope met reality. How could I do this? I had no script. I headed to her room with a weight on my shoulders. But whatever burden I felt paled in comparison with hers. As I walked into her room, I saw her for the first time. I noticed her shirt, baseball hat, and socks. This was the first thing I learned about her. I knew her heart bled Cubbie blue. I offered my hand and said hello.

REFLECTION: She died during that hospital stay. Although several years have passed, she was one of the first people we thought of when the Cubs won the World Series. The physician-patient relationship is not one sided. Hope, and the comfort it brings our patients, touches our hearts as well. Doctors are not immune to the emotional challenges of recognizing, accepting, and communicating when our shared hope is no longer consistent with reality. For baseball, hope springs eternal. But unlike the Cubs, she did not have the luxury of an endless number of seasons to start over and try again.

Chadi Nabhan can be followed @chadinabhan
Jeremy Topin can  be  followed @jtopin1

Snow Day

I woke up to a blanket of white covering the ground. Unlike in childhood, this was not met with excited anticipation. Forced to skip my morning coffee, I layered up in my thermal gear and put on my boots, the blister on my heel reminding me to buy a pair that fits properly. I struggled to find gloves and settled on a mismatched pair as I braced for battle with the cold. I tried not to tweak my back while repeatedly yanking the starter cord on our stubborn snow blower. As I began to clear the thick snow off the driveway, the layer of ice hidden below was a reminder that I was not quick enough to clear the driveway last time. Obstacles and challenges now loomed ahead as I anticipate colder temperatures, icy windshields, hazardous driving, and ill-fitting boots and blisters.

When did snow become the enemy? When did it become a chore? When did it become something that added to the weight of my day?

I was nine years old when one of the biggest blizzards in Chicagoland history hit. My school day was replaced by a snow day. Multiplication tables and PE class were swapped for snowballs and snow angels, while mini-mountains of snow popped up all over the neighborhood.

I remember the frustration of trying to make a snowball out of fresh powder, the crystals sliding through my fingers like weightless sand. And finding success with heavier packing snow, hearing the scrunchy sound made while rolling it to form a giant snowman.

I remember hot chocolate in my stomach any money in my pocket after shoveling driveways in the neighborhood.

I remember a blizzard in Madison, Wisconsin. A snow day in college, of all places! Playing tackle football in powder up to my knees, my quads and hamstrings burning. Hot and sweaty, despite the cold air, and the sting of snow on my face after a tackle. The pleasure of finding that perfect balance, not falling backwards on my ass or forwards on my face, while skitching on the back of a car all the way down Langdon street.

I remember the joy in my son’s eyes the first time we went sledding, on a snowy day in Michigan City, Indiana. The cold air was no match for the warmth of Madison’s smile.

When I was younger, snow was white and light, scrunchy and fun. An invitation to play. An opportunity to explore. A far cry from its impact on me now.  Snow is now an obstacle to be shoveled, a hazard for my teenage drivers, slush and salt to erode the underside of my car. It’s work now.

My thoughts turn from snow to my relationship with medicine. Another area in my life that has evolved from joy and excitement to frustration and challenge.

I remember the first time I put on my short, white coat and entered a real patient’s room to take my first history. I was hesitant to cross the threshold, nervous I’d be discovered as a fraud, an imposter. But excitement trumped anxiety as I stepped into the room, introducing myself as a student-doctor for the first time.

I remember the pride of wearing a stethoscope around my neck. The thrill of learning and doing each new procedure, pushing through my fear of causing harm. My growing sense of accomplishment as I read up on an unfamiliar disease or diagnosis adding to my knowledge base. Each patient a potential puzzle of signs and symptoms to piece together, not knowing what the ultimate picture would be. It was unknown and exciting. A snow day.

Somewhere along my path, medicine, like snow, got flipped on its head. More electronic medical records and charting than direct patient care. More patients to been seen but not more hours available in a given day. Journals and review articles pile up, still left unread. And instead of hot chocolate waiting for me at the end of a long day, there are only unfinished documentation and lingering worries over difficult decisions made.

More work than play. More obstacles than challenges. More conflict and tension than excitement and possibility.

The other day, a medical student I’d hardly noticed on my ICU service asked to see a new admission. I looked up, and saw the enthusiasm in her eyes. And, for a brief moment, I saw what she saw. A giant snow covered sledding hill ready to be climbed up and slid down. And I longed to be there on that hill, launching myself off the edge and feeling the cold air stinging my face, not knowing when I might finally come to rest. Ready and eager to race back up to the top and do it again and again, until I no longer felt my fingers and toes.

And it feels like a snow day again in my ICU.

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Defending the Lob, Managing the ICU and Emotional Intelligence

The lob shot.

As a goalie, it’s my nemesis. It was my major weakness in college and even more so today. Standing (or more appropriately treading) 6’3″ tall, with an even longer wingspan, I have always been eager and ready to explode up and out of the water, my arms outstretched, to intimidate a shooter. My height, along with my gangly arms and a quick first reaction, are great tools to disrupt, alter and ultimately block my opponents’ shots.

But my kryptonite is the lob shot. It turns my strength against me. A patient opposing player, by waiting a split second, lets my aggressiveness work against me. By allowing me to rise up and out of the water first, a shooter can then release an agonizingly slow arcing shot, up and over my now sinking self, to then drop into the opposite corner of the net. I react. They wait. And I’m beat.

When I correctly anticipate the lob, it’s demoralizing for the shooter. With minimal effort, the ball is not so much blocked as “caught” in humiliating fashion, usually deterring the shooter from another. But when my legs have already committed to a direct shot, all I can do is swivel my head and watch as the ball takes its time, teasing and taunting me, just out of arms reach, and lands in the net.

In college, it took a while to develop patience. To dial back my brashness, my impulsivity. Wait that extra split second. Take in the arm angle and the eyes of the shooter. Trust myself and my abilities to make the block even if I delay for a brief moment. My teammates challenged me with lobs over and over again in practice, until finally a change occurred. Thinking, instead of just reacting. Using my frontal cortex, instead of my primitive brain. And for a while, I had the upper hand against my nemesis, and my opponents as well.

Tempering my first reaction has never been easy, either in or out of the water. My initial response to life’s challenges tend to be more reactionary and visceral. In one’s college years, that lack of patience and emotional intelligence is somewhat expected, if not the norm. Not so much when in mid-life and caring for the critically ill or teenage children.

The ICU will never be mistaken for an Olympic sized pool. And my children, despite how it may feel, are not opponents on a challenging team. But the unique nature of an ICU and family dynamics make both areas ripe with opportunities for a battle between my brash, impulsive tendencies and my more mature, deliberate and thoughtful side.

The space that exists within the confines of the ICU is awash with challenges. Rooms are filled with the tension that accompanies the acuity and intensity of critical illness. ICU physicians are tasked with navigating multiple health care professionals, who frequently have honest differences in opinions, and sometimes supercharged egos and attitudes as well. Families and surrogates of patients, residents, nurses and students all operate in this landscape, within their own sphere of swirled thoughts and emotions. There are a multitude of relatively quick decisions that need to be made. Do I intubate or not? Do I send them on a road trip for a CT or stay in the more stable confines of the critical care unit? Do I commit a patient to an invasive procedure with potential complications or hold off and continue with the status quo?  But it’s not just the decisions themselves. There is a qualitative component as well. Do I take the extra time to explain my thought process to the nurse, resident or student at the cost of delaying decisions for the next patient? Do I provide more than a cursory update to a family as I exit a room, or do I sit down and invite them to share their angst and fear. Do I do so at the cost of delaying the start of my office and the patients waiting there? Do I share my inner head voice and its whispers of fear, concerns and self-doubt? Or do I project unwavering confidence and certainty? Challenges lie not just in making decisions, but in the manner they are carried out and executed. To grow, not just as a competent clinical doctor, but as an empathic physician as well, one needs emotional intelligence to navigate such complex waters.

These days, back in the pool, I find my old nemesis is back to taunt and haunt me. My height and wingspan may be unchanged, but the same cannot be said about my explosive move up and out of the water. Over-eager and anxious to defend a shot on goal, I now have the added challenge of being a bit slower and quite lower out of the water. I don’t have the luxury of waiting that split second anymore.

I find history repeating itself, with my current teammates showing the way. They challenge me in practice, frustrating me with lob after lob. But they are not content to stop there. They let me know that I may be the only one in the net, but I am not alone in defending it. Through their efforts in games, fighting for position, and playing a team defense, they buy me back the time I have lost. They remind me to trust them. And in turn, trust myself, allowing me to tap into my thinking brain in order to defend the lob.

My experiences with the team continue to parallel my life. Just like success in the net is a result of a team effort, so it goes in the ICU. I’d be lying if I said the years have not affected the excitement and enthusiasm of the young attending physician I used to be. There is now a component of fatigue and burnout that I often need to shake off before rounds. Some days it feels that I am on an island when dealing with a crisis or challenge. That is neither true nor accurate. The nurses, residents and students, along with my physician partners are teammates too. Together, the challenge of taking care of the critically ill seems less daunting, giving me the time and space to harness my thinking brain.

There are moments when instinct and gut reactions are critical for success. But when I am able to bring both parts of my brain to a challenge, the enthusiasm that comes with  impulsivity and brashness along with the wisdom that accompanies maturity and thoughtfulness, good things happen. Not just in the pool or ICU, but in life as well.

 

Hiatus

Time passed. One day became two. Weeks became months. What began as a temporary absence evolved into a void.

No writing. No journaling. No attempt at an opening paragraph. On occasion, I hastily blurted a random thought or two into a voice memo on my phone. But the recorded words stayed in coded form. Bits and bytes waiting to be transcribed and brought to life as words on a page.

For the better part of a year, I have worked on at least one piece of writing at a time. An idea or story. An outline for a book. Always some small part of my brain processing and playing with an idea, while racing through the craziness of my day.

But the last few months have been a bit of a hiatus.

The intensity of my work life and family life converged for a while, with quite a bit of travel mixed in. San Francisco for a conference. Klamath Falls, Oregon for a brief family Thanksgiving. Preparing for my son’s long-awaited homecoming for winter break back in Chicago. Christmas spent covering the hospital and ICU. Ringing in the New Year while working in an ICU in Elkhart, Indiana.

And somewhere between the West Coast and the rural Midwest, I got lost.

That little part of my brain stopped sorting new thoughts and ideas. Instead, I fed it a steady diet of Netflix, cryptocurrency and progressive politics. Comfort food for my cerebral cortex. And as the writer inside me took a leave of absence, I found other parts of myself taking a time-out as well. My running shoes sat untouched most days. My swim bag remained buried in the corner of the mudroom, as I went AWOL from my water polo team. Whatever exercise I managed was mindless and without purpose. As my writing and journaling stopped, so did my desire to physically push and challenge myself.

But I did not close my eyes.

I watched my daughter continue to face the challenges of being a sixteen-year-old junior in high school, navigating the ever-shifting landscape of friends, school and life. Juggling final exams and ACT tests, hours of dance and Poms, injuries, babysitting and a boyfriend. Like her dancing, She stumbles at times. But like she does when dancing, she pops right back up and continues moving forward, becoming more adept and able every time.

I watched my son face the challenges of being nineteen, while working on the universal yet uniquely personal battle between autonomy and dependence. Between freedom and restriction. More often than not, that process now takes place out of my sight, as he currently lives two thousand miles away. I am still coping with this. But each time our orbits align (and hopefully not collide), I see a little bit more of the man he is becoming.

I watched my wife challenge herself to tap into her mathematics and education degrees, putting herself out there to help neighbors, family and friends with the mysteries of high school geometry and pre-calculus. I saw this amazing cycle of confidence build. Not only in her students as they became better prepared for their quizzes and tests, but also in herself as she applied a unique approach to help each student fill in his or her specific knowledge gaps.

I watched. More passive than active. Letting events play out and unfold before me, often while stretched out on the family room couch. My sweatshirt and a comforter worked overtime, protecting me from both the falling temperatures outside and having to actively engage in the world around me.

But it is time. Time to leave passivity behind, along with the comforter and the couch.

Despite the cold, I went for a run outside the other day. A few years ago, running in sub-freezing temps was a no-brainer. Just put on the right clothes and go! Now it’s a bit of chore. It took more thought and effort to push through the inertia of inactivity.

It started with shivering. Time felt slow. Movement felt forced. But ten minutes into the run, my body heat began to build, and with it, the familiar warmth comforted me. The sound of air moving in and out of my mouth layered on the rhythmic sound of my shoes disturbing loose gravel and stone under my feet, brought me back to an old familiar space.

For the next forty minutes my joints ached. My calves and hamstrings burned. I sweat. It was snowing, and the falling flakes were cool on my flushed face as I ran through their vertical descent. And sometime during that relatively routine run that I had done countless times in the past, a small dormant part of my brain came back to life.

It’s time again to write.