I get it.
You’re filled with good intentions and positive motivation, tempered only by long hours of clinic where your intelligence is constantly questioned and abilities doubted, after years of an exhausting and mentally challenging curriculum that you’ve managed to survive by sacrificing your social life, your youth, and your formerly skinny body to study sessions, a collection of notebooks and highlighters, and a regimen of coffee and chocolate.
When you tap on our clinic door and step inside with your smile and spiral-bound clutched to your chest, straight blond hair and wire-rimmed eyeglasses, you’re hoping for a positive interaction. One that makes you glad of what you’ve sacrificed.
But this is the Center for Cancer and Blood Disorders at a Children’s Hospital, and everything about you pisses me off.
My 3-yr old daughter is coming out of anesthesia for an MRI of her heart. She’s got dangerous amounts of iron accumulated in it from so many life-saving blood transfusions, and right now, she can’t walk. She can’t really even sit up. She won’t eat. She won’t drink. She’s spent the last 40 minutes howling inconsolably to “go home,” refusing treats and distractions of every kind, but we can’t go home, because she needs another life-saving blood transfusion that’s going to pour more iron into her overburdened heart. She sees you enter and automatically greets your perkiness with the sort of authenticity I can only dream of: “Stop talking!” She shouts. “Stop talking, Stop talking, stop talking, stop talking,” she intones.
So you and I step outside the curtain. We can still hear her repeating her unhappy mantra.
And you begin asking me stupid questions.
“She’s not feeling well coming out of the anesthesia?”
“Yeah,” I reply, with a tight smile.
Because you have no idea what it’s like to sing “Twinkle twinkle little star” over your daughter as her eyes grow big and panicked at the toxic-smelling gas, as you see her torn between wanting to trust you but starting to get scared, as she coughs and struggles for focus as you choke on the first word of the next verse, and quickly swipe away escaped tears (you didn’t want to cry! you wanted to be strong!) because you don’t want her to think anything’s wrong, and so you gather courage and stroke her hair and sing: “When the glorious sun has set, when the grass with dew is wet, then you show your little light, twinkle twinkle all the night…” And her eyes flutter unfocused and legs twitch as she stops fighting, and you hesitate to stop singing but now she’s sleeping, so you kiss her temple and leave, only to be called back into recovery to hear her screaming for you, IV in place for transfusion, anesthesia heavy on her breath, and she’s so out of it she doesn’t recognize you, even as you hold her and say, “it’s me, it’s mama, I’m here,” and you know she shouldn’t remember anything of the loud, rumbling, tunnel-like machine, or how her determined diaphragm needed extra drugs to be forced to quit, so they could hold her breath for her, and the MRI could take clear pictures…
Did she dream of being suffocated?
“She’s really low in blood,” you, the cherry doctor, inform me. “Hemoglobin of 6.9. Did you realize she was so low in blood?”
My eyes narrow. “Yes,” I hiss. The entire first floor of the hospital realizes she is low in blood. Everyone in the lobby, waiting rooms, admissions, gift shop, coffee shop, cafeteria, valet, and garden area realizes, at the very least, that she is very, terribly distressed.
“Well, I mean…” you stumble. “Has she had symptoms of low blood?”
I am shocked by the stupidity of your question. Of course she’s had symptoms of low blood! She’s having them right now! You interpret my dumbfounded expression as not knowing the symptoms of low blood. You begin to list them. “Irritability…” you suggest.
“Yes!” I cut you off. You scribble something, likely ‘irritable,’ in your spiral-bound notebook, and it could mean me, but I know it means my daughter. Your attempt to be clinical increases my fury. You’ve memorized a few descriptor words to slide into your differential diagnosis. Do you have any sense of their meaning? Do you know what it’s really like to live with an anemic toddler? No!
On the other side of the curtain, my daughter is still complaining (her blood for transfusion has not yet arrived) and I know her liver is also complaining about needing to detox all the anesthesia, but not having enough hemaglobin to do it. I want to go to her.
“She has been irritable.” I snap. “Fatigued. Sleeping more. Pale. Not eating. Not sleeping deeply or well.” All the classic symptoms you’ve memorized but have never experienced, you ninny. “I would’ve transfused her last Thursday if it weren’t for the MRI today,” I continue sharply. “We needed to do them together.” I can’t help it. Every word I speak is an accusation.
“Oh, right, ok. Is she on any medications or supplements besides the iron chelator?” you ask.
And I’m about to lose my shit.
“She is on whatever you have in your notes.” This isn’t my first rodeo, Cherry Doctor. You aren’t the first Cherry to pretend you don’t know what she’s on!
“Oh, ok. So how much leucine is she taking?”
I take a deep breath and dive in. “Approximately 430 mg 3 times per day in milk, but she doesn’t always drink it all and I won’t force her on this one, so it’s sometimes half or a third that amount.” I am talking as fast as a horse race broadcaster. I step one step away from you. You sway towards me.
“Oh, ok… and a… Chinese herbal … is it a solution?”
Cherry, you have no understanding of Chinese herbs. No education in them. Don’t know what they can do or don’t do. Don’t know how to dose them. Can’t even pronounce them. (I barely can.) And you probably have all sort of ignorant opinions on how dangerous they are.
I’ve discussed these herbs with my daughter’s regular, attending doctor. I’m not about to discuss them with you. And then another cherry next month. And then another. At this point, I know the drill. I know that I know far more about my daughter’s rare blood disorder and the world-wide treatment approaches than you or most of the other “specialist” cherry doctors will ever know.
“Yes. And no. It’s an herbal formula.” Again, I move to walk away.
“How much are you giving?” And I’ll give you persistence.
“3 grams, 3 times a day,” I sigh in exasperation.
And I know that doesn’t actually mean anything to you. You wouldn’t know if that was high, low, or perfect dosage of a formula. Because you don’t even know the names and dosage for the herbs in the formula. You don’t even know what to ask me, that’s how little you know.
“Well,” you say, desperate to re-engage me in a way that restores your authority, “we won’t get the results of the MRI for a day or two, but when we do we will let you know and we can talk treatment decisions.”
No, Cherry Doctor. You and I aren’t making any decisions about anything.
But, “Alright thanks,” I say, dismissing you, and I slip back behind the curtain and onto my daughters hospital bed. She’s got Disney’s “The Princess and the Frog,” playing, though she is too upset to watch it. She immediately calms and quiets upon my return. This time.
Cherry doctor, I know you will return later this afternoon, to put your stethoscope to my daughter’s heart (though it will tell you nothing useful) and palpate her abdomen (and that action will be fruitless and unhelpful, too).
The truth is, Cherry, you have nothing to offer my daughter. The researchers who created safe blood transfusion and developed iron chelation medicine, the every-day heroes who donate blood, and the nurses who needle cleanly and swab with sanitization: they save my daughter’s life every month. At this point, you doctors are almost useless. You have nothing to offer.
Especially you cherries.
You see, doctor, I know the truth: my daughter is actually helping you. Educating you in rare, incurable disease. And I’m kind of sick of doing it.
So maybe take a lesson from my daughter’s regular, attending hematologist. He is relaxed. He is thoughtful. He isn’t recording numbers and symptoms in a notebook as if it’s the sum of my daughters existence, as if he can quantify her and pronounce a verdict. No, he spends most of his time with us – 80 or 90% of it – talking Disney princesses.
Because he knows it’s all he can really offer. With my daughter’s blood disorder, treatments are all probability and weighing lesser of evils. He won’t walk in one day, feel her belly, listen to her heart, and exclaim that he knows how to cure her. Talking princess is, really, all he can do. It’s how he can best help her.
We will probably never see you again. So, good luck, Cherry. Yes, the moment you popped in, your very presence pissed me off. You were doomed from the start. And I made your rough day on this particular rotation a little tougher. I don’t feel bad about it. And I’m not sorry. But I don’t wish you ill.
I hope you learn well. I hope you learn the human and clinical aspects of disease. I hope you find balance and satisfaction in being the provider of treatment, the healer, and the humble side-liner, the helpless witness to life.
I hope that next time you’ll get assigned to an easier case. Or at least, an easier mom.
And most of all, I hope you don’t give up. I hope you stay persistent, and that maybe, someday, you do help cure a rare disease. No matter how bad it gets. How futile it feels. How unappreciated you feel. How powerless and angry and sad. Don’t give up.
Because I never will.