Coverups, Not Confessions, Rule in the Medical World

In April 2015, I was at the peak of my career as an award-winning high school English teacher.  After slaving for pennies for 27 years, I was finally making dollars.  The last five or six years of teaching would be good ones filled with days of enjoying my students rather than stressing over their test scores and putting away money for retirement.

In March 2016, I married a man whom I loved deeply.  I looked forward to the years ahead that we would spend together laughing and loving our way through our senior years.  Although my early love life resembled a pile-up on an icy interstate, I was sure this relationship would sail down life’s highway like a 1958 Cadillac convertible on a warm summer day.

In June 2016, I went to my oncologist for my quarterly BCR-abl blood test.  Since being diagnosed with chronic myelogenous leukemia (CML) in 2005, I had been under the care of oncologists at Washington University Physicians at Barnes Jewish Hospital in St. Louis, MO.  The miracle drug Gleevec had been approved by the FDA shortly before my diagnosis, and since my cancer responded well to the medicine, a type of chemotherapy drug in pill form taken daily, I had avoided a bone marrow transplant.  While unpleasant side effects did plague me, they were manageable.  I adjusted to my new situation as a person “living with cancer,” and forged ahead with life.

Through the years, new generations of TKI-inhibitors became available.  One called Sprycel worked very well for me, making the disease undetectable on a very low dose for long stretches of time.  Still, fatigue was a problem for me, so when my doctor deemed it was safe to do so, she gave me a three-month chemo vacation.  It was such a relief to have energy again!  Unfortunately for me, the cancer returned, and I had to resume taking the medication.  The good news is that the cancer slipped right back into the undetectable category, and I soldiered on.

When I married in 2016, I thought a chemo-break would make for a better honeymoon phase of the marriage.  My doctor obliged with my request and assured me that all of the research promised that if I relapsed, which we assumed I would do since I had done so before, promptly resuming drug therapy would arrest the disease again.  Ah, three months of feeling well stretched before me like a sun-soaked beach of white sand on the shore of a sparkling blue lake.

The calendar pages flipped quickly to June 2016.  Once again my husband and I made the ninety-minute drive to St. Louis for my blood work.  When I was diagnosed, CML was a pretty rare cancer, so it made sense to go to Siteman Cancer Center where doctors were familiar with the disease.  When I was feeling well, I would make an event out of it, going to The Hill for some fabulous Italian food or The Galleria for a little shopping. Now I wish I had transferred my care to Springfield at some point, but I thought I was getting better care in the big city where doctors kept abreast of the latest research and treatment advances for CML patients.  As the saying goes, however, bigger does not necessarily equal better.

A week after my blood draw I call my oncologist’s office for my test results.  Nurse Practitioner Holly Comer delivers the news.  “Alice, your cancer is still undetectable.  You get another three months of chemo vacation!” she says.  I am stunned.  I fully expected that I would have relapsed and would have to resume taking the medication.

“You’re kidding!” I say.

“Nope.  We will check you again in September.”

I let out a whoop as I hang up the phone.  Summer 2016 is going to be the best yet.

Fast forward to September.  Five weeks into the new school year I have to take a day off to go to St. Louis for blood work.  I have been tired, but I don’t think too much about it; getting back into the work routine takes time.  I have also been experiencing pain on my left side under my rib cage every time I eat for some weeks, but I don’t give that too much thought either.  At 55 I am starting to feel lots of little aches and pains that accompany aging.  The thought that my cancer is causing my fatigue and pain never enters my mind.  As my husband drives, I use the car time to grade papers.  Maybe I can make a dent in the perpetual stacks of essays that threaten to bury me from August to May each school year.

The routine is always the same at the Siteman South County campus.  Arriving early, I find a comfortable spot in the waiting room.  I try to grade papers, but my eyes and mind wander.  Surrounded by so much suffering, I feel lucky and a little guilty-call it thriver’s guilt.  I have never lost my hair, never had a port, never been confined to a wheel chair, never had to wear a mask everywhere I go because of a dangerously weak immune system.  A man about 65 years old wearing a cap that identifies him as a veteran of the Vietnam War checks in and then shuffles to a chair across from me.  Clearly exhausted by the short walk from the parking lot to the lobby, he plops heavily onto his seat.  His waxy complexion is white as Elmer’s glue.  Next to him sits a woman and her child of five or six.  The little girl watches a movie on a tablet while her mother absent-mindedly feels the fuzzy growth of new hair under her head scarf.  Dark circles tell the story of long nights of worry at the thought of her daughter growing up motherless.  As phlebotomists and nurses draped in white lab coats call out names, cancer patients ravaged by the disease and the treatment come and go from the waiting room.

Eventually I hear my name and follow the lab coat to his cubicle.  This one is a vampire sucking tube after tube of blood from my vein.  “Wow!” I say.  “They want a lot today.”

“Yep,” is his chatty reply.  Finally, he pulls the needle from my arm, wraps my elbow in that strange stretchy Ace-Bandage-like stuff and sends me back to the waiting room.  Again I try to grade papers, but it’s futile.  I look at the young mother.  I wonder what kind of cancer she has.  Probably breast cancer. God, I can’t imagine trying to mother a young child while going through chemo.  I don’t want her to catch me staring, so I shift my attention to an elderly woman in a wheel chair.  Massively overweight, she fills every inch of her chariot.  Oxygen tubing snakes from a tank attached to the back of the chair up around her neck and into her nostrils.  Based on her pasty complexion, I assume she does not feel well, but she is cheerful.  She jokes with the old boy volunteer who works the room trying to make people comfortable and see to their needs for drinks and snacks.  Where does she get her will to fight on day after day?  Surely she must be physically miserable, but her attitude is great.  If I were in her condition, I would ask for the Kevorkian cure.

Another lab coat calls me name, and my thoughts return to my own situation.  I’m not nervous.  I’ve done this forty or fifty times.  The nurse weighs me, and I’m down a few pounds, always a good thing in my mind.  She takes my temperature and my blood pressure, both of which usually run on the low side.  Today is no different.  She shows me to the exam room and tells me my wait shouldn’t be long.  In this antiseptic room where everything is white except the needle depository that blares a red warning of tainted blood, I can finally get some grading done, I think. As usual the room is freezing, and I pull my sweater tight.  Is there some sadistic doctor who enjoys cranking the air conditioning up to watch cancer patients turn from a waxy white to a cool blue?  Before I can run with that thought, I hear a knock at the door.

That’s another thing I do not understand.  Doctors always tap on the door, but they never wait for the patient to say, “Come in!”  They push in immediately, so what is that little tap for?

Expecting to see Holly, the nurse practitioner I have come to know and like over the years, I am surprised when Dr. Cashen enters.  Because my cancer has always responded well to the treatment, I am an easy case, which is why they don’t waste the doctor’s time on me very often, I figure.  Today, she dispenses with her usual preliminary pleasantries.  “The cancer is back,” she says.

“How do you know?” I ask.  “The BCR-abl isn’t an instant test now, is it?”

“No,” she replies.  “There are signs of the disease in your CBC.  Sit up on the table here.”  She pats the exam table, and I climb aboard.  She plugs her stethoscope into her ears and listens to my heartbeat and my lungs.   The Dr. Cashen I have become acquainted with over the last decade is soft-spoken and mild-mannered.  She has always offered me a limp handshake when she entered the room and smiled easily.  She has rarely seemed rushed or stressed and always patiently answered my questions about the latest research and clinical trials.  Today she is different, all business.  “Lie back,” she says, and I follow her command.  She pulls out the extension so my legs are supported.  Then she starts pushing around on my belly.

“Ouch!”

“Your spleen is enlarged,” she tells me.  Apparently, my big spleen is the reason for my recent discomfort after eating and my weight loss.  Now I am growing concerned.

 

 

Please do not suppose I am sharing my experience out of a desire to suck sympathy from my readers.  While I do experience moments of self-pity, I am not throwing a grand gala with the theme song, “It’s my party and I’ll cry if I want to” playing day and night.

Published by

alicesuearmstrong

Medical negligence and malpractice is an epidemic in this country. I know first-hand how life-altering and damaging being the victim of incompetent doctoring can be. Of course, doctors are not God; they are fallible human beings, but many of them refuse to admit their mistakes and take responsibility for them. My goal is to get legislation passed in Illinois and Missouri that requires doctors to tell their patients when they make an error in treating them.

4 thoughts on “Coverups, Not Confessions, Rule in the Medical World”

  1. Beautifully written,Alice. Your voice is authentic and gripping to me. Hate that you’ve been through this, but your story is remarkable.

    Like

  2. Alice, I have been in a lot of exam rooms and medical lobbies, but I don’t remember much about them. Your writing is so marvelously detailed and puts us right there with you. I always wanted to know your story in detail.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s