A Mother’s Guide to Leukemia and Its Aftermath by Cindy Winetroub Rogers

pink tricyle with shadows

It’s true what they say.

It’s rarely good when your phone rings after midnight. Usually goes something like this: Mom, I’m in jail. Mom, I crashed the car. Mom, I was raped. You get, Mom, I have leukemia.

Remember what the psychic said?

Two years before your daughter is diagnosed, your sisters give you a psychic reading for your 53rd birthday. Can’t get a clear picture, he says. You’re entering a faith and trust walk. WTF, you thought then. WTF, you think now.

Chernobyl was nothing compared to this.

Your daughter is on the couch. She sits up, lays down, can’t get comfortable. Burns inside and out. Not even Oxycodone helps. More than Chernobyl, the radiation oncologist said when they readied her body to accept the new marrow. She’s sure, though you tell her otherwise, she’ll never feel normal again.

Worse than when she saw Hitler.

Post radiation pain is worse than sepsis, which came the last week of chemo after Group A Streptococcal bacteremia entered her bloodstream from a chapped lip. Worse than Acute Respiratory Distress Syndrome, which followed the sepsis, along with intubation and a fentanyl-induced, four-day trip. She saw Hitler, and blood dripping from the ICU room’s walls, was sure her nurses were trying to kill her.

Chloe’s not so bad after all.

1:51am but you can’t tell her she should go to bed early, get up early, stick to a routine. Because she shouldn’t have inherited such shit genes to begin with. So you rub her hairless head, say, sure, let’s watch another episode of The Kardashians. As many as you want.

You still have to try.

Scroll your inbox. It is, in post-transplant lingo, Day 25.  Seventy-five more and you can breathe easy. Click the link in the Leite’s Culinaria email. Enter to win a set of silicone cooking utensils, a Le Creuset casserole dish, a Waring Pro Blender.  Because you feel it. Your luck’s changing. That your daughter has made it this far without incident, infection, or hint of GVHD is proof positive. Right?

Doctors don’t know everything.

Day 33. The transplant doc says your daughter looks like an old Jewish woman. Your daughter, who opted for fashionable beanies over wiggery, is not amused. Strategize damage control but blow it completely. Say, she was just trying to be funny, instead of what your daughter needs to hear, which is, your doctor is a fucking bitch.

That Barbie bicycle is a piece of crap.

Your daughter is three years old and wants a Barbie bicycle. You propose the following: Go a week without nursing and the bike is yours. The bike breaks the day after she gets it. Thus begins a life of false promise.

Maybe you always knew.

Your daughter isn’t surprised she got Leukemia. Like Beth in Little Women, she had no plan for life. You shudder. You thought that at twenty-three, too. You remember her waving from inside the bus that took her to day camp when she was five, her face pressed against the smudged window. You saw terror in her five-year old eyes, thought of children heading to Auschwitz.

At least one night of normal.

She needs a dress that will cover the two-port catheter inserted into the vein above her right breast. She also needs a transfusion, but the clinic closes in 45 minutes. She says the ER is not an option. So, you walk four New York City blocks from the clinic to Urban Outfitters where she tries on five dresses, selects two. You slip your hand beneath her head and the hard floor when she slumps to it. A stranger helps you both outside and into a cab to the ER, says she’s a cancer survivor, too. While your daughter transfuses, you slip back to Urban Outfitters. She spends New Year’s Eve with her friends; her catheter hidden under her new open-back black dress, her doctors’ cell phone numbers in her purse.

Listen closely.

Day 43. Remind your daughter to take her temperature. She’ll say, Fuck off, stop micromanaging me, it’s time you leave!  She’ll be right.

White wine, black ink.

Day 58. Your back yard. Remember when the sepsis left but the fevers raged on. You suspected, and the world wide web confirmed, Acute Respiratory Distress Syndrome. Took the doctors three days to concur. Sip your wine. Fortification for the fight still ahead. Against medical professionals, insurance agents, administrative Nazis. Decide to ink Faith & Trust on your wrist.  Not faith and trust in God, science, or process. Your daughter’s blood counts are rising. The Chenin Blanc tastes good.

 

Cindy_W_Rogers headshotCindy Winetroub Rogers is a transplanted Texan, living in Rochester, New York, where she raised her daughter and manages a small menagerie of dogs and cats. She writes advertising by day and creative fiction and nonfiction by night. She also irregularly indulges her passion for food at her website.

 

 

 

 

STORY IMAGE CREDIT: Flickr Creative Commons/Guiherme Appolinario
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  • Elaine

    Faith & Trust… but also Love & Truth. Beautifully written piece.

  • Jennifer Lang

    Thank you. So well written. So heart-wrenching. So nicely crafted.