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Seat Me at the Kids’ Table Please

Posted Dec 28 2011 11:20am
Posted in: Health , Stupid Cancer
It has been said that young adult cancer patients often find themselves in the limbo between Pediatrics and Adult medicine. ...

It has been said that young adult cancer patients often find themselves in the limbo between Pediatrics and Adult medicine.  I fell into the Pediatric category, despite being 28 years old when I was diagnosed with a pelvic Ewing’s Sarcoma, a rare bone cancer that predominantly affects young boys between 10 and 20 years old.  So as a woman pushing 30, I was an unlikely candidate.
The reason I ended up in Pediatric was because of the nature of the disease:  the experts in Ewing’s Sarcoma are Pediatric doctors.  To be honest, I was relieved when I found out I’d be treated among children rather than adults.  I always liked it better at the kids’ table on holidays, and at age 23 when I was still seeing my Pediatrician, she told me it was time to start seeing other doctors.
All the big money is in Pediatrics so is like flying First Class.  It’s not just more comfortable, it’s more dignified.  Someone is there to serve your every need.  You’re treated like a full person. Everyone knows your name, from the nurses to the janitors, and affectionately calls you buy it.
Replace warm peanuts and hot towels with good anti-nausea meds and warm blankets.  Instead of deplaning first, you get anesthesia up front for uncomfortable procedures, like bone marrow aspirations and port insertions. After my surgery, a resident informed me that they would do these procedures bedside without anesthesia during my hospital stay on an adult recovery floor.  When my chief oncologist got wind of this, he was alarmed and told me, “Don’t’ let them do ANYTHING like that at bedside.  That’s not the way we do things in Pediatrics!”
As in First Class, you get the best and the brightest attendants, which is to say the nurses are young and cute and quick on their feet.  And the individual chemo cubicles in the Pediatric Day Hospital are like getting one of those completely flat beds on an overnight flight to London instead of squeezing into a cheap vinyl coach seat with no legroom.  In fact the whole cubicle concept gives you a sort of private carriage under possibly the biggest skylight in all of New York City complete with a motorized screen that shades the sun when it gets to be too much.
I can just see the tagline now – Pediatric Day Hospital:  Come for the chemo, stay for the atmosphere.  But it’s the substantive care, rather than pure esthetics, that truly make Peds a first class experience.  The doctors addressed concerns about long-term effects such as how my fertility would be impacted and how to prevent potential bladder cancer and heart damage from the chemo by giving me overnight IV hydration backpacks during the nights between chemo treatments.
In stark contrast was my experience on non-Pediatric floors.  During treatment when I would get infections after each chemo cycle and subsequently be hospitalized, I was often transferred to another floor to make room for “truly sick children,” emphasis on children.  I found it to be a different world indeed.  On the Ostomy floor, for example, a nurse opened the tab on an IV bag with her teeth. One nurse pushed Dilaudid, a strong painkiller, into my IV so fast that I immediately threw up epically.  And there was an entire day when I went without any doctor-ordered meds.  Not to mention the moldy shower curtains and dirty microwave, general apathy, and the failure of nurses’ aids to regularly empty the “hat” in my toilet that measured my urine output.  (To remedy the latter, despite the risk of coming into contact with a contaminant that threatened my suppress immunity, I took to measuring it myself and marking down my output on a piece of medical tape adhered to the bathroom door.)
Most people I know thought it would be depressing being surrounded by sick children, but I found them to be my comrades in arms.  Like Tabitha, a British five year-old with Neuroblastoma, whom I met at the Ronald McDonald House on Thanksgiving.  As I walked towards her table, she spotted me and said in her fantastic accent, “I used to be bald.”  She herself was sporting a quarter-inch of hair, which I’m assuming she saw as significant compared to my smooth-as-a-rink head.  Then there was Linda, a teen-ager roommate of mine who leant me her Seventeen magazines and showed me how to log into the nurses’ station computer to check my email. 
But the most empowering experience I had in Pediatrics was with a patient I never even saw.  She was in the chemo cubicle next to mine on my first day of treatment.  I heard her battle cry over the wall:  “I. DON’T. WANT. IT. IN. MY. BODY!”  It sounded like the straw that broke the armadillo’s back.  In this case it was the mandate that she take some oral Tylenol, probably pre-medication for a blood transfusion.
This was not a petulant child, I could tell.  She had simply seen enough and was setting a limit.  And in so doing, she had declared to the entire Pediatric Day Hospital and the world at large how all of us felt about the disease and the treatment.
The only downside of Pediatrics was the Clown Doctors from the Big Apple Circus, whom I found tediously upbeat and as aggressive as subway solicitors.  They went around giving “Kitty Cat Scans” and “Chocolate Milk Infusions” and generally mucking about in a red-nosed, big-shoed way.  Outside my treatment cubicle, I’d stick a post-it note that said, “No Clowns Please”  to avoid contact.  I once saw outside a patient’s room a large sign that said, “No Clowns and No TALKING about clowns.” Clearly, I wasn’t alone in my dislike of anyone getting all Patch Adams on me.
The kinder, gentler treatment I received in Pediatrics made me expect a kinder, gentle treatment from life.  This meant ultimately not going back to my old crappy job and to breaking up with my ambivalent boyfriend to seek out real love with a fellow (adult) patient. 
The most important lesson I learned in Pediatrics from children was how to be an adult.  To be unabashedly honest about your feelings, to find the joy in putting your feet on the base of your IV pole and riding it down the hallway like a skateboard, to boldly make new friends, and to set limits when things get to be too much. 
What bothers me is that such treatment is not extended to all cancer patients – hell, to all medical patients.  Why are the protocols for adults so different than those for children?  Is it because insurance companies do everything they can to cut costs and adult patients make up so much of their client base?   Is it because we are expected, by virtue of age and assumed self-restraint, to tough it out through the hardest of times?  This seems like a particularly American mentality: hardship is part of survival.
But my bottom line is: no one should have to fly coach when it comes to illness. 

A Boston-based writer, Su Ciampa has written about everything from losing her virginity by way of an unconventional medical procedure for Jane to turning the World Trade Center site into a buffalo paddock for Su has also written essays about arts and culture for ARTNews, Budget Living, Bust, Edible Brooklyn, Seventeen, and Time Out New York, as well as She recently completed work on No Clowns Please, a memoir about being an adult patient in a pediatric ward.
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