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.