We Interrupt This Story for a News Flash

Warning: This post contains coarse language.  I thought about prettying it up, but decided against it.  This blog is about truth-my truth and the truth about the astonishing frequency of medical errors-and the truth is often ugly.  Jack Nicholson shouting, “You can’t handle the truth!” in A Few Good Men is one of the great scenes in cinema.  I use the language that best suits the idea I am trying to communicate to my readers.  If you can’t handle coarse vocabulary or strong feelings, do not read on.

 

I am pissed!  Okay, that is not news.  That is a oft-experienced emotional state for me, especially since November 2016, if you get my drift.  The news flash is that last week I found out my cancer numbers are rising after being in steady decline for months.  And that REALLY PISSES ME OFF because I SHOULD NOT BE in this situation!  I am here because Cashen and Comer FUCKED UP MY CARE!  And I am not handling it very well right now.

My current oncologist said not to be alarmed (easy for him to say).  We will test again at the end of February and see what’s up then.  My life is not in danger at present.  The numbers are still well within the chronic range.  However, my quality of life IS in danger of plummeting.  If I have to increase my Sprycel from 20 to 40 mgs. (it doesn’t come in 10s or 30s and cannot be cut in half), the side effects I experience are much more pronounced, especially the fatigue.  What’s more, I fear the chance that my drug allergy will return is very good on a higher dose.

I try to tell myself to stay in the moment.  At this very moment everything is okay.  I try to pray.  I try to meditate.  But all I do is agitate myself with “what ifs” and “if onlys.”

As I have said before, I am not looking for pity.  What I am doing is grasping at ways to cope with a really fucked up situation.  I would love to forgive, forget and move on, but I don’t know how to do that.  So, I will keep blogging, contacting lawyers, and efforting (yes, I know that’s not a word but I use it for my friend Steve and to make myself laugh) to get a political ally to sponsor legislation to require medical providers to behave ethically since doing so does not come naturally to many of them.

Thank you for reading.  Venting does help, momentarily anyway.

 

Wattle Should Never Be Bright Red

Chemo-brain is real.  The drugs that destroy cancer cells also destroy memory cells.  While I am sure a neurologist would cringe at that description, I experience chemo that way, and the stronger the dose, the worse my memory is.  At times, my memory is about as dependable as the weather forecast.  November through December 2016 was such a time, so those days are lost in dense fog.  My memory of New Year’s Day 2017, however, is crystal clear.

I awoke with a big red splotch on my left cheek (the cheek of my face that is).  Throughout the day of the 1st, the red splotch spread down my face and neck.  Within a few days, it was all over my face, neck, chest and hands.  It turned bright red and itched fiercely.  The rash was similar to an allergic reaction I had experienced on Tasigna, another CML drug, but I had eaten crab legs on New Year’s Eve and thought I might have developed an allergy to crab.  I called Holly at Wash. U. and described the rash to her.  She said it did not sound like an allergic reaction to medication, so she didn’t want to see me.  Since I was miserable, I didn’t want to wait to get into my GP.  Instead, I went to Prompt Care where I was diagnosed with contact dermatitis and prescribed a cream.

The cream did exactly nothing to treat the rash.  Over the next two months I saw Prompt Care doctors, my own general practitioner, and my dermatologist two or three times.  I think I called my oncologist’s office a few times too, but I don’t know that for sure because the chemo ate my brain cells, and the records department at Washington University Physicians has yet to send me a complete set of my medical records though I have ordered them several times.  More on that later.

I kept telling doctors that I thought a drug allergy was the culprit, but none of them believed me.  In Feb. 2017, I documented my misery.

 

 

At this point, please excuse a brief digression from my story for a confession.  I am vain! I am vain, and I always look so old in selfies that I generally don’t take them.  These days when I look in the mirror, all I see is my turkey waddle.  I’m glad I don’t have to look at myself but once or twice a day!  The wattle was promised at birth, a gift from ancestors on both sides of my family.  About a year ago, I went to a plastic surgeon to see what it would cost me to make that wattle disappear.  The answer was a whopping $10,000!  So, barring some unforeseen inheritance from a distant relative like Matthew Crawley came into on Downton Abbey, I will have to learn to accept my waddle with a little gratitude for living long enough to acquire it.

Okay, digression over.

In addition to the physical misery of the rash, the bright red turkey waddle made me as self-conscious as a teenager with bad acne, but my hands were even more embarrassing.  I don’t know if you can tell from the photos, but they were swollen, scaly, bright red, and I know you cannot tell this from the pictures, hot to the touch.  I felt like Gregor Samsa in Kafka’s The Metamorphosis, only instead of waking up as a cockroach, I had morphed into a lobster, and any source of heat, like warm water or sunlight, burned as if I was going into the lobster pot claws first.

The dermatologist prescribed prednisone and another cream.  The rash faded, until the steroid was gone.  Then it would come right back.  Finally after several rounds of prednisone failed to vanquish the rash, my dermatologist agreed that I was suffering from a drug reaction.  The Bosutinib was the culprit.  Again I called Holly, and this time I insisted on being seen.  A day or two later I headed for St. Louis thinking my problem would soon be solved by my oncologist.  In reality, I was driving headlong into the next phase of my waking nightmare.

Guilt and Fear Drive the Making of a Lot of Bad Decisions

I am in an exam room when Dr. Cashen breaks the bad news. “Your spleen is enlarged,” she says, “a sign of very active disease.  We need to treat it aggressively.  I’m going to prescribe 400 milligrams of Bosutinib a day.”

“Okay,” I say.  Quick thinking is not one of my strengths.  If I had anticipated this turn of events, I would have done some research and had a list of questions for her, but caught off guard, I have nothing for her.  What’s more, I am surprised but not terribly concerned.  The last time I’d had a chemo break and relapsed, resuming the Sprycel regimen quickly quelled the cancer, and I assume this time will be no different.  What I do not understand is just how much my cancer has escalated.

I leave St. Louis with a prescription and an appointment to return in a month’s time when, I am certain, the blood work will show the disease retreating, my medication dosage will be drastically reduced, and life will go on as planned.  Silly me.

October 2016 is a hard month.  Teaching is never easy, but the chemo-brain fog and fatigue make getting through the schooldays really hard work.  I have no energy or patience for coping with difficult student behaviors, high maintenance parents, or micro-managing administrators.  By the end of each day I am often in tears from sheer exhaustion.  Being on this strong dose of daily oral chemo is like drinking a quart of vodka every night and waking up with a miserable hangover every morning (without any of the fun getting drunk).  But, I am sure this level of medical misery will last only thirty days.  I can do anything for that short time, I figure. In November, Dr. Cashen will lower the dose of Bosutinib, the side effects will ease up, and working will be bearable again.  Silly, silly me.

I return to Siteman Cancer Institute, and this time I see Holly.  She has me lie back on the exam table and pokes around on my stomach.  When she is done, I sit up.  With her back toward me as she walks to the sink to wash her hands, she says, “Your spleen is still a little bit enlarged.”

“Shit!” I blurt.

She spins around and looks at me, a little bit wide-eyed and red-faced, and says, “What?” Now, Holly knows me pretty well since I have been seeing her several times a year for a decade.  She knows that I am not bad-tempered or aggressive but that I am expressive.  I have cursed around her before.  After all, chronic cancer can test one’s ability to stay on the sunny side of the street all of the time.  I had also had some frightening news a week after the September visit.  My cancer numbers were in the accelerated range of the disease.  When Holly had told me on the phone what the BCR-ABL test results were, she downplayed the seriousness of my situation, but I knew enough to be a little frightened at that point, and I think I am entitled to a little guilt-free cursing to express my frustration at the whole situation.  So her strong reaction surprises me.

Now, of course, I know that all of Holly’s behaviors that seemed a little off at the time were the result of a guilty conscience.  She knew my spleen was enlarged because she had made a serious mistake when she read my chart in June.  In November 2016, however, I was just sort of baffled and overwhelmed by things, and my thinking was fuzzy because and the Bosutinib.  Had I been thinking clearly, or had someone with me whose mind was sharp, I might have grown suspicious a lot earlier.  Later I will talk about how critical it is that anyone undergoing treatment for a serious medical problem have an advocate with them at every appointment.  For now, however, I will get back to my story.

“Sorry,” I say.  “It’s just that I was hoping my cancer would be back under control, so that we could drop the dosage.”

Holly stands at the sink, washing her hands, talking with her back to me.  “You are responding to the medication, but Dr. Cashen wants you to stay on the 400 milligram dose for at least a couple more months,” she says.

“I need a note for work then,” I reply.  “I can’t teach on that.”

“No problem,” Holly says.  She leaves the office and returns a few minutes later with the note.  “We will see you again in December,” she says.  I drag myself out of the doctor’s office a little worried and a lot depressed.  Though the holiday season is quickly approaching, I do not feel like celebrating.  My husband and I do not go to The Hill for lunch or World Market to pick up a tin of the best ginger snaps in the world.  We drive straight back home.  The medication makes me nauseous, headachy, and weak.  All I want to do is get back to the couch and try to sleep through the misery.

Looking back, I see that Holly was scared.  She was scared that I was somehow going to find out that she and Dr. Cashen were the cause of my suffering.  She was afraid that my cancer might not return to the chronic level, that I might need a bone marrow transplant if the medication did not work.  She was afraid that she and the good doctor would be sued.  That fear, I am certain, drove every medical decision from the day they discovered their mistake.  Whereas before the error they had looked at me objectively and made decisions about my treatment based on studies, and data, and what they had learned about my body’s reaction to medications, now they saw a potential lawsuit and their own incompetence when they looked at me.  And, since they chose to hide their mistake from me, the guilt they felt when they saw me must have been pretty intense, if they are fully human.

Having been driven by fear and guilt in my own life more times than I like to acknowledge, I know they are not safe drivers.  In fact, they have run my life right off the road, down an embankment, and flipped me over more than once.  Dr. Cashen’s and Nurse Comer’s guilt and fears nearly totaled me.

 

 

The Office of Risk Management in Plain speak: The Office of the SNAFU Cleanup Crew

I once heard a guy say, “Don’t piss on my back and tell me it’s raining!”  Thinking it was a humorous expression, I laughed, but when my oncologist and her nurse, whom I will refer to as Cashen and Comer from now on, pissed on my back and told me it was a warm shower, there was nothing funny about it.  When I replay the events as they unfolded, which I do way too often for my own good, stress hormones and adrenaline dump into my blood stream and I want to punch those people.  Now I have never punched anyone, and if I did, I would probably break my hand because I don’t even know how to make a proper fist.  Still, the anger wants a physical outlet.
People who have never been victimized by a doctor, or at least don’t know that they have, will say things like, “Doctors are human; they make mistakes” or “You need to forget it and move on,” or “Forgiveness is the key to getting past the anger,” or “You’re only hurting yourself, you know, by staying mad.”  I want to reply, “You go through two years of medical torture because your doctor fucked up and didn’t tell you about it, and then I might listen to what you have to say,” but I really don’t wish medical malpractice on anyone.  Knowing that the doctor did not mean to hurt me does not help one iota because she concealed it from me once she realized her mistake.  Heck, I didn’t even know medical institutions had risk management departments.  I had never had a reason to think about it.  Now that I have had dealings with Washington University’s Office of Risk Management, I know it’s staffed by a bunch of assholes who care more about money than they do human life.
George Grob, Assistant Inspector General for Evaluation and Inspections with U.S. Department of Health and Human Services, writes in a memo, “Broadly defined, risk management includes any activity, process, or policy to reduce liability exposure.”  So you see, risk management is nothing more than a euphemism for lying, either by omission or by telling untruths to avoid being sued.  When Cashen and Comer realized they fucked up, they went to risk management, not to me, with the truth.  Their loyalty was to saving the hospital money, not to me, their patient for over ten years.  Betrayal, grief, anger, and frustration swim in my blood, stew in my belly, and climb into my throat looking for release, for a safe expression of unsafe feelings and desires.  If you do not understand how I feel, I am happy for you.  I hope these words never do ring true for you.

While I Was Waiting

If my story were a novel, the audience at this point would be witness to a conversation taking place in the doctor’s office while I, the protagonist, sit in the lobby awaiting my fate.  Since I wasn’t privy to the events as they unfolded, I can only use my imagination to guess what happened, but I figure it went something like this:

It’s 11:00 a.m. on a sunny September morning.  Holly goes to her office to switch patient charts.  She plops the chart of the patient she’s just seen on the short stack on the right corner of her desk and picks up the top chart from the larger pile, those of cancer patients booked for the rest of the day.  Before she sits at the desk scattered with files and framed photos of her smiling children she nukes the half cup of coffee she left behind an hour ago.  Carrying the steaming mug to her desk, she sits down and looks at the name on the chart, Alice Armstrong.  Holly is pleased.  She has been seeing Alice for ten years, and she’s an easy patient.  There’s never any bad news to deliver to Alice.  She responds well to the medication, so the appointments are always perfunctory.

Holly opens the chart and begins her review.  First she wrinkles her brow.  Something is amiss here.  Where are the test results from June’s BCR-abl, she wonders.  Slowly, she flips through the pages.  Hmm.  Not here.  I must have forgotten to print them out, she thinks.  She logs onto the computer, pulls up Alice’s records, and scrolls down the page.  She remembers talking to Alice on the phone in June and telling her the cancer was still undetectable, but now she cannot find those test results.  Picking up the phone, she dials the lab.  As the conversation with the lab manager progresses, Holly’s eyes open wide and her mouth drops open.  “Holy shit!” she says as she drops the phone back in its cradle.

Dr. Cashen is in an exam room with a patient.  While Holly waits for her, she looks at the CBC results of the blood test just run on Alice.  As her eyes run down the page taking in all of the numbers flagged as abnormal, her complexion grows as white as her anemic patients’ pallors.  Alice’s disease has not only returned but progressed, she realizes, and she is to blame.  The chart trembles in her hand and tears start to well in her eyes.

Dr. Cashen slips from the exam room looking at the papers she holds in her hand.  She senses a presence and looks up to see Holly standing before her clearly distressed.  “Holly, what’s wrong?” she asks.

“I screwed up,” Holly blurts.  “I screwed up!”

Taking Holly by the arm, Dr. Cashen leads her nurse to her office.  They sit.  “Tell me what happened,” she says gently.

“I’m not really sure what happened,” Holly begins.  “In June, I told Alice her leukemia was still undetectable and gave her another three months of chemo vacation.  But she had probably relapsed in June because her CBC numbers are awful.”

“If her disease was undetectable in June, it’s not your fault that it came back and escalated in the last three months,” the Dr. said.

“The problem is we don’t know if she was undetectable in June…because the BCR-abl was never done.”

“What do you mean it wasn’t done?”

“I was reviewing her chart and couldn’t find her June test, so I called the lab and they said the test was never run.  Someone cancelled it.  So I must have been looking at the results of her March test,” Holly confessed.  One tear trickled down her left cheek.

Dr. Cashen logged on her computer and brought up Alice’s records.  A heavy silence settled in the room while the Dr. scanned numbers and read notes.  After a few minutes, she put her elbows on her desk and rested her forehead in her hands.  Suddenly she looked up and pushed her chair back from the desk.  “You aren’t the only one who screwed up,” Dr. Cashen said.  “I wrote in my notes that I suspected her disease was back in June based on her elevated LDH level.  I wrote that I would follow up with her test results.  Clearly, I dropped the ball too,” she said looking into Holly’s eyes.

“What are we going to do?”

“Call Risk Management,” Dr. Cashen replied.  “They will advise us on how to handle it.”

“I don’t want to see her,” Holly said.  “I’m afraid I will cry or something.”

“That’s okay.  I’m the one who needs to see her anyway.  It’s clear from her CBC that we need to be aggressive in her treatment to get the disease back under control.  That is my responsibility.  Now, get someone from risk management down here ASAP.”  Dr. Cashen looked at her watch.  “Her appointment was at 11:15.  It’s noon now, and we need to know how to handle the situation before she’s seen.”

Holly headed for her own office while Dr. Cashen picked up her phone and dialed her boss’s number.  She got his voice mail.  “John, I need to speak with you ASAP,” she said and hung up.

******************************************************************************

I pulled my cell phone out of my purse and looked at the time.  I turned to my  husband who was flipping through a Reader’s Digest.  “Man, they are really running behind today,” I said.  “Someone must be really sick.”

Don’t you love irony?!

 

 

 

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.