Some weeks have passed since I last wrote. For those of you who have been reading for a while, I’m on staycation again, which means taking stock in coffee shops, sleeping, trying to improve upon myself, and playing with E. I’m in a coffee shop called L’Aube in Fairmount. It’s a Parisian-style creperie, complete with art-deco windows, better-than-usual coffee, unsmiling waitstaff, and a sense of timeless remove from the busy world. Outside the window, two young shirtless guys are pulling up weeds and talking about girls. The neighborhood kids are coming home in ones and twos from wherever they spend their summer days.
We’ve been traveling a lot in the last few weeks to spend time with loved ones. Lots of hours in the car. Lots of rolling farmland and rest stop bathrooms and spotty cell phone reception. Little feet wading into creeks. Waterfalls. Ladybugs. Raccoon (which I learn upon googling is its own plural). Not to mention E’s first contact with tents and trampolines. Standing in the backyard of C’s childhood home at night, thousands of fireflies flicker on and off in the surrounding trees and fields at every height and depth into the vanishing horizon. It is more light and movement than the eye can track — dazzling in the most literal sense. I try to capture it on video but all you can see is a black square of night. It’s one of those shows you have to see live.
C and I have been spending lots of time together and I am reminded how lucky I am to find such enjoyment in it. We found out recently about the end of a long marriage among my parents’ friends and, holding hands with C across the gear shift through the streetlight-lit miles home, I can feel the weight of what they have lost. They had, at one time, seemed like an irrevocable couple. I think about the moments when a sarcastic barb comes to mind that you know would hit a soft spot, when the rhythms of daily life feel suddenly a little stale, when a chance flirtation arises with a stranger. Can the dissolution of love be prevented by a series of intentions and choices? I wonder. To quote Tina Fey, “It’s a burden, being able to control situations with my hyper-vigilance, but it’s my lot in life.” Whether it’s magic or a reflection of good habits of behavior or a little of both, I never take it for granted, that which always seems to be renewed between us. (Do you hear that universe? I don’t take it for granted! I am so, so grateful! Give me this continued comfort. Oh, and let my child be healthy. Just those two things. Does this count as a prayer?)
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Ok, so that last part shouldn’t be in parentheses. Since rotating on oncology last month, I’ve been saying quite a few of these little unstructured, non-religious prayers to no one and everything for no particular reason (what is the relationship between praying and the bargaining stage of grief? Discuss!). Up to this point, I have managed to (mostly) avoid reading on E’s body the signs of every dreaded thing, but last month I found myself staring at her across the breakfast table and wondering: Does she look a little paler than usual? She is a little sweatbox at night and even though she was just as sweaty as on every other night I would run my hand through her damp hair and think: Are these the night sweats that you hear about? Almost every story on oncology begins with “So-and-so was an otherwise healthy child until…” Is today the day? I wonder sometimes. The last day of normal life? The day before the story changes forever? One of E’s favorite songs these days is “The Lion Sleeps Tonight” and I’ve decided it’s the only viable lullaby for parents. The lion is out there but tonight he sleeps and so you can also sleep. But as far as tomorrow goes….. awemoweh awemoweh, awemoweh awemoweh.
Oncology was a difficult rotation for me, and not only because of parental anxiety. One of the cardinal rules of medicine is to first do no harm, but in oncology you have to get used to doing as much harm as the body can possibly tolerate. The children have to get much sicker before they can get better, and a percentage of them die of the treatment. When the conventional therapies fail, hope is kept alive via increasingly experimental therapies. Without the experience of having seen lots of children cured of their cancer, with only one month caring for the sickest of them, it was hard to draw the line between worthwhile and futile suffering. On rounds we discussed the ethics of stopping curative treatment for dying patients but privately I found myself struggling more with the ethics of continuing. Even though I knew rationally that chemotherapy would be the only path to survival for these patients, my affective instinct was to let these little people with their steroid-swollen cheeks and bruises at every vascular access point have some peace.
My first call night I went to the bedside of one of the patients to draw blood for a test that couldn’t wait until the morning. When I opened the door, my first thought was, this is a dying person. I have never before had that thought about a patient, at least not in such a visceral and immediate way. She was asleep and I wanted to back quietly out of the room, out of respect for what comfort sleep might afford her. Instead I got my supplies together and proceeded with what would be two failed attempts at sticking her while she cried weakly. It was her family’s wish at that point that we do everything to prolong her life but now that she has died, I can’t say that sticking her was the right thing to do. But it was not the wrong thing either.
I will say this about my month on oncology: Pediatric cancer patients and their parents are tough as nails. The rest of us out here in healthy-kid land are playing for the farm team. I was humbled by them every single day. There was humor where humor should be impossible, generosity and kindness towards us as providers that was neither expected nor necessary, unblinking courage in the face of the previously unimaginable. I have always felt that the parental drive is one of the most ingenious and miraculous of nature’s innovations, but my appreciation for its force is on a whole new level.
If I had to distill what I learned from my oncology rotation into one sentence it would be this: Sadness and joy are not opposites. That, and love. Always love. Don’t waste a minute of it. The Bible, Hafiz, all the pop songs, they’re all right.
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On the Saturday night of one of our trips, I found myself in a small wood-beamed concert hall listening to chamber music. My mother offered to spend the evening with E so that I could attend the concert, a rare event for me these days. Prior to E’s birth and residency, in the 31 years I in retrospect understand to have been my youth, music was my ground water. Bach was the first thing in the morning and the last thing at night. Ear buds were always in my ears. At least half of the most impactful moments of my life happened during concerts. Now I can’t keep ear buds in my ears, for how then would I hear my child asking for more milk, please? Also, the classical music radio station in Philadelphia is not good (Are you listening, rich people with so much money that you have already stamped out hunger and refrozen the polar ice cap? Give them more money!). But I digress.
The first few pieces on the program were atonal, challenging, but full of pleasure, thrumming with novel sounds and unexpected vibrations. I had forgotten how music can bypasses cognition, like a spinal reflex but in your soul. Then came the first simple chords of the Schubert song “Wanderers Nachtlied.” The singer, a student, had a tremendous, gorgeous, rich voice — a gift. At the song’s most dramatic crescendo, her pitch wavered, but this only added to the music’s immediacy and passion. Every cliche happened at once: my heart skipped a beat. The breath caught in my throat. I got goosebumps. I wanted it to last forever but of course it didn’t. Live music is like life: No replays. The sweetest things come and then are gone and you have to hope you were paying attention.
A few days prior to the concert, I had been practicing neonatal resuscitation maneuvers on a simulation doll, and so as I was listening to the singer, all I could see in my mind’s eye were the doll’s vocal cords as visualized during an simulated intubation attempt. For those who haven’t been on the operator end of a laryngoscope, placing a breathing tube involves inserting a lighted scope — the laryngoscope — into the mouth, pushing the tongue out of the way, lifting the soft structures away from the larynx and visualizing the vocal cords through which the tube has to pass. The cords are white to pink, thin but tough, oriented exactly like an upside down V below the epiglottis and above the esophagus. The dark triangle between them is all you can see of the trachea beyond. Like many of the body’s parts, the vocal cords look much too simple for the complex task they perform. Due to their location and a number of other factors, it can be difficult to see the cords and so laryngoscopy is an anxious business, especially under emergency circumstances. On the other hand, when you a good view of the cords and can see the breathing tube pass through them, they are like the runway lights that guide a pilot toward some hope of safe landing on a stormy night.
I have visualized plastic vocal cords dozens of times and real cords several handfuls of times, but I had never connected them with the act of singing. When you train as a medical student and a resident, you are always being warned against becoming disconnected from the patients you are treating. If I had a nickel for every time a lecturer in medical school used the famous William Osler quote, “It is much more important to know what sort of patient has a disease than what sort of disease a patient has,” I would have about $15, which is a lot of nickels. Starting off down on the path of medical school, it is hard to imagine how such a thing could occur: How could you possibly become disconnected from the patient? As a medical student, you are focused on learning to take a history and do a physical exam, tasks which are inseparable from the unique humanity of the patient before you. As training proceeds, the skills and knowledge you strive desperately to master involve less the question of what happened to Mr. X and more questions like how do I maintain a perfusing pressure in a septic patient and which antibiotics cover Enterococcus and how do I intubate a baby who has been born through meconium? These questions are undeniably important, but they can lead you away from people into a world of numbers. Once you are in a world of numbers, it is easy to focus on physiology for its own sake — normalize lab values, get the heart pumping again, get fluid off. If you are not careful, you can lose sight of the WHY of it all, the inside jokes and love affairs and rugby games and chamber music concerts that make people who they are, for which they live, without which life is a rhetorical question. You can become disconnected from your patients not out of a lack of empathy or hard-heartedness but because there is so much happening at the level of the cellular membrane. I mean, what’s more important, breathing or singing?
It may be that some clinical distance is necessary to successfully intubate someone, but next time, once I’ve gotten the view, once the tube is through the cords, once position has been confirmed and the carbon dioxide detector changes color and the patient’s vitals start to calm down, I’m going to try to remember to speak a little incantation to myself: “That they might one day sing.” That I might continue to listen for the song.
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I left the concert at intermission to get back to E. In the parking lot, I looked up the words to the Wanderers Nachtlied (how has the internet changed life? Let us count the ways). Like many of Schubert’s songs, the text is by Goethe. It is imbued with that Romantic ardor for both death and the natural world that could be paradoxical but isn’t:
Over all the hilltops
In all the treetops
hardly a breath of air.
The little birds fall silent in the woods.
Just wait… soon
you will also be at rest.
It’s a beautiful poem, and a beautiful promise, but it’s not the only way to go. For my part, I’m hoping for all the snarls and sighs of the forest, things eating and being eaten, the dance of a thousand lustful fireflies, to be released from fear into the chaotic tangle of everything.
Beautifully written. I really enjoyed reading this. You should think about pulling together excerpts of your blog for a book.
Thanks, Rebekah! I’m hoping to so something like that. Hope you and yours are well!
Two posts in one week! I feel rich.
My daughter was a toddler when I did pediatric tumor oncology conference every week for three months. I palpated her kidneys in the bathtub every night in fear – she thought it was a tickle game. She sweat a lot too – slept in her underwear until about a year ago now she uses a night shirt. The axe has yet to fall. I hope mine falls first.
The kids and babies at my month log crime lab rotation were harder, but I never saw the dying ones at Children’s Hospital. Just the dead ones there. I learned there is a huge hole in our justice system – the few who advocate for these abused children rarely win. One day I left work early in a pile of tears and barely made it to my secret crying pier at the foot of a park on the Arkansas River without having a wreck. I cried and self-soothed for three hours.
That which does not kill us makes us stronger and sets us up to one day be advocates for the injustices we witness in the world. Our children will see this example. Modeling is the best form of parenting. So simple. Actions speak louder than words.
Hi Gizabeth, Thanks for reading and for your kind words as always! Child abuse medicine is one of the saddest and most complicated areas of pediatrics. I had a patient as a medical student who suffered abusive head trauma and neither of her parents confessed even though they were the only people in contact with her and in the end she ended up being placed back in the custody of her parents. But when you see the children placed in foster home after foster home, that doesn’t seem like the solution either. So tragic. I agree with you that modeling is the best form of parenting, though that sets such a high bar! Trying to be the best possible model!
Well just because you have the intention (modeling) doesn’t mean you always get it right! But if you can manage over 50% I think you might be doing something right:). At least that’s what I tell myself.
My kid’s stepmom (amazing) has a sister (foster) that grew up in the foster system. She managed to find stability and get a good job and now works as a social worker within the foster system to give back. I am learning so much from her about that life. Her success in life and career and relationship is so uplifting.
I read a lot of blogs here and there but I don’t think I’ve ever commented on any of them. Something about the anonymity of the internet makes it easy to do that. This post struck me so profoundly, however, that I feel compelled to comment.
I am a pediatric hematology-oncology fellow and I stumbled upon this post just hours after my patient died. While dealing with the utter tragedy of her death and my powerlessness in the face of this horrific event, I came upon your words. They made me cry with abandon, nod with understanding and feel just a little less alone in the wake of death. Your writing is superb and I appreciate your candor and eloquence. I know that this field I have chosen is too often heart-breaking and devastating but I think you captured also that it can be more joyful and uplifting than anyone could think possible. Thank you for your thoughts and your words. Keep it up.
I think I have more of a Dylan Thomas philosophy on death:
“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.”
But I’m not a pediatrician, and that’s just me. 🙂