Rage and Fear Are Terrible Companions

I woke today to a cool, wet April morning.  The rain is the perfect excuse to stay indoors today and read a good book or make a pot of soup, but first I must write the next chapter of my story.  I don’t really want to write it; I know anger will grip me in its fist and squeeze all of the moment’s joy right out of me.  If I remain silent, though, I help to perpetuate the problem of rampant medical malpractice and negligence and the ensuing cover-ups by doctors and the institutions that employ them.  So, here I go, traveling back to July 6th, 2017.

Amy and I are still in Rochester, Minn. at the Mayo Clinic.  Dr. Elliot had ordered a battery of tests for me when I saw her on July 3rd.  On the 5th, all of my internal organs had been x-rayed or scanned and a pint of blood had been sucked from my veins.  I had also seen an allergist, which was a waste of time.  Having no rash at the moment for the doctor to look at, he had told me to take an extra antihistamine if the rash returned, which I knew from experience would do no good at all.  Now, Amy and I wait to see Dr. Elliot.  Because she had been so confident the first time we saw her, we are sure she will have a plan for desensitizing me to the chemo medication.

The wee doctor slips into the exam room, acknowledges our presence, sits at the counter, and opens her laptop.  She pulls up my file, begins scanning my test results, and blurts, “Why are you anemic?”  The way she asks the question, I feel like we are playing a game of Clue and she’s a detective asking “Why did you kill Miss Scarlet with the candlestick and leave her in the conservatory?”

“Um, I didn’t know I was anemic,” I say.  My answer does not please her.

“You could have internal bleeding,” she says.  “I’ll put in an order for a stool sample kit that you can pick up on your way out.”  Oh joy.

She continues scanning my test results.  Of course, my white count is high because I have been off chemo for five weeks, but it’s not dangerously high like it was the previous September.  Everything else looks okay, she says.  My spleen is not enlarged, my liver is functioning well, and my heart and lungs are doing their parts just fine.  Then she looks from her screen to me and says, “Well, what do you want to do?”  Her question stuns me.  Quick thinking not being in my genes, I have no immediate answer. The slow processor in my brain is inherited from my father.  He was a very smart man, and his responses were always well thought it and clearly expressed, but time was not money to him.  Many were the times that the family sat around the dinner table talking until someone asked him a question.  Then a long silence would ensue.  Just when we had decided he either did not hear the question or did not want to answer it, he would start speaking, offering a thoughtful, articulate response.  I am not as thoughtful or articulate as my father was, but I am just as slow.  And when I am angry or hurt or surprised, my processor goes from slow to sloooooooooooooooooooooooow, and tears threaten to fall.

Dumbfounded, I stare at her.  Later, in the hotel room, I will scream, “What the fuck did she mean ‘what do I want to do?’  She’s the doctor!  She’s the one who’s supposed to have the answers!  Two days ago she acted like this would be no problem.  Where did that doctor go?  These people with their fancy degrees and God complexes.  Do they get their kicks screwing with suffering people or are they just incompetent boobs impersonating competent doctors?”  In the moment, as tears gather in my eyes, I say something like, “What are my options?”

She explains that desensitization is not an option because I was already taking the lowest dose of Sprycel available, 20 mgs., and I think Didn’t you know that the first time I saw you?  I knew that and I am not a hematology/oncology doctor at one of the top hospitals in the country.  I bite the words back as alienating her will not help me a bit.  She goes on to say that the only medication I have never tried tends to cause strokes on a regular basis, so that drug is out.  I can either try Gleevec again, which did not work all that well for me in the past and had lots of unpleasant side effects, or I can take the Sprycel and live with the rash, or I can have a bone marrow transplant since I had a matching donor.  However, she does not recommend that last option except as the only alternative to death by CML.

Never having seen my chemo rash, Dr. Elliot does not understand just how bad it is when it’s active, but I know living with that rash is not an option.  1) It interferes drastically with my quality of life, and 2) it would likely reach a level of toxicity that my body just could not handle without taking prednisone for the rest of my days, which would also destroy my quality of life.  It looks like returning to Gleevec is my best option.

Though it is impossible to know if I will have an allergic reaction to Gleevec until I took it, I figure I will.  It stands to reason that I am now allergic to some basic component of the chemo that is present in all of the medications and not some inactive ingredients that are different in each medication, so I ask if I can take a very small dose of Gleevec and build up over time to prevent an allergic reaction to it.  “I cannot recommend that,” she says “because it’s not an efficacious dose.  If the cancer continues to escalate, it might become uncontrollable while you are taking low doses of Gleevec.  Then you will have to have a transplant, and you do not want that.”  I nod my understanding and agree to take the dose she prescribes.

As we all rise to part company, Dr. Elliot hands me an 8 X 11 envelope, and says, “These are yours.” Then she opens the door and leaves.  I watch as the wee doctor disappears around a corner.  And the hope that filled me just two days ago vanishes like Darrin when Endora snaps her fingers.  Defeated and deflated, Amy and I head for the shuttle stop in front of the main building to return to our hotel.  We walk in silence as we try to swallow this unpalatable reality.

When we get back to the hotel room, I open the envelope Dr. Elliot gave to me.  Inside are the records that Washington University had sent to her.  For ten years of quarterly visits, the sheaf of papers is awfully thin.  Quickly scanning the documents, I realize why the papers are so few; all that was sent to Dr. Elliot was a year-end summary of my care for 2005-2015 and the report of my most recent visit in May.  No mention of my chemo break in 2016 and the subsequent relapse; no mention of the allergy I had developed to the medications; just a sunny report of how great I was doing at the end of May.  For the second time today I am blind-sided.  I feel like a boxer on the ropes taking a one-two punch that takes my breath away.  I tell Amy what I am holding in my hand, and she crosses the room to take a look.  “They are covering something up,” I say.  Amy agrees.  “I’m going to sue them!” I yell.  Amy lets me rant as I struggle with Rage.

For me, Rage is a physical enemy that takes control of my body.  It starts in my toes, arching them to ballerina pointe.  It climbs up my legs tensing my thighs.  It spills adrenaline and cortisol into my blood stream preparing me to fight or take flight.  It turns my gut into a hard fist that punches up into my throat.  The fist unclasps and the fingers tie my vocal chords in a knot so that the primal scream I so desperately want to expel cannot escape.  My body is primed for action, but there is no action to take.  I cannot take flight from my cancer or the allergy, and I really don’t know who to fight.  Washington University Physicians is a huge entity.  I sense with my whole being that someone there screwed up my cancer care somehow, but that’s hardly a clear enemy to do battle with.  So I am filled with impotent Rage that is toxic to my system, and I’ve no idea how to subdue it.

After crying for a few hours, I succumb to exhaustion and sleep.  The next morning we pack up the car and head for home.  As the miles spin away, we talk about my options and decide that modifying my Gleevec dose is the best course of action.  I will start with a very small dose every other day and build from there.  Perhaps that will desensitize me to whatever it is I am allergic to in these chemo drugs.  I know that I am taking a risk, but I will not live with lobster claws for hands and skin covered with a rash that drives me to madness with its itching.  My course of treatment decided, we talk about suing Dr. Cashen and N.P. Comer and Washington University Physicians.  I vow to get all of my medical records to find out what they did not want Dr. Elliot to see, hire a lawyer, and make them pay for all of the pain, misery, fear, and heartache their mistake has caused me.  (I will later learn that the system is rigged in favor of the medical establishment so that the vast majority of injured patients never see justice served.) I add those two tasks to the list of things I need to accomplish before I return to the classroom in August, including getting divorced, selling the marital property, buying another house, and moving.  If what doesn’t kill you makes you stronger, I will be Atlas by the end of 2017.  But that will only happen with the support of my sisters and my friends.

One of the few positive effects of this experience on my life is the heightening of my gratitude for friends and family.  Every day, I thank my higher power for the people in my life who love me despite my many flaws and stand by me in hard times.  Without them, I do not know where I would be today.  Had I been alone in Rochester, Minn. when Hope vanished, or in Rochester, IL when my marriage dissolved, I don’t know what I would have done.  With Fear and Rage as my only companions, I may have ended a 15-year run of sobriety or ended my life.  In July, Sister Amy saved me from facing Fear and Rage alone, and in August, Sister Laura will rescue me.  I will be forever grateful and indebted to them.  Gloria Gaynor is singing “I Will Survive” in my head, but I know I will not survive alone.

Jilted

Since we are currently in the grip of March Madness, I thought it appropriate to start today’s blog entry with the words of an NCAA star of bygone days, Bill Walton.  He says, “I believe in science and evolution. I’ve been to the Grand Canyon.” Yes, water is an incredible sculptor, carving incredible beauty out of rock over millions of years.  The Canyon deserved more than a few hours of my attention and exploration, but my time and funds were limited, so I said goodbye to Arizona and pointed the car back toward New Mexico.  No more Truth or Consequences for me, however.  This time I was going to the sophisticated city of Santa Fe.

The drive from Williams to Santa Fe was only six hours, but “I pulled into” Santa Fe “just a feelin’ ’bout a half past dead.”  It is the oldest capital city in North America, and I felt like one of its founders.  Fatigued as I was I could not find my way through that city to Rod and Renee’s house even with Google Maps.  That city is the most confounding maze of streets and alleyways I have ever tried to navigate.  If Santa Fe had city planners as it was growing, they must have been devilish people who amused themselves watching tourists go mad traveling in circles searching in vain for their destinations.  And the locals have little patience with slow out-of-town drivers.  If impatient residents not been riding my bumper every second from the moment I drove into town and the roads were more than one lane wide, I might have had a chance at following the directions on my phone.

After my third time around the same loop of streets, I pulled into a parking lot in a little park and called Renee to tell her I was hopelessly lost.  She laughed and then jumped into her car to rescue me.  I followed her to a turnoff I had passed all three times I had looped around the neighborhood and up the rocky road to their mountainside home.  Upon arrival, I parked my car and did not drive again until the day I left town.  I didn’t need the frustration of figuring out a city more convoluted than my love life.  Coping with FEAR, that passenger I had picked up in Hot Springs, was quite enough stress for me.

Rod emerged from the house with a hug and kiss and muscles to carry my bag.  Renee and I hugged and laughed at my ineptitude (because she and I are a lot alike in that way) and she showed me to my bedroom.  The first thing I did, as fun company will do, was promptly flop on the bed for a long afternoon nap.  That evening we dined al fresco on their patio.  Rod and Renee are gifted chefs, so we ate a scrumptious dinner while looking at a spectacular panoramic view of the Sangre de Cristo Mountains.  Once again, Nature managed to pry my mind away from my own weighty woes, for a while anyway.  Hummingbirds buzzed around the feeders while Luna and Google, the dogs in residence, ran the perimeter of the property keeping intruders at bay.  I wonder: if you wake each day to exquisite natural beauty, do you cease to see it? Do the cares of day-to-day life blind you to Nature’s glory just as living in urban blight can?  Do people who live close to Nature suffer less depression than those surrounded by concrete, steel, and exhaust fumes?  I’m guessing they do.

Central Illinois has its own kind of beauty: lush fields where cattle graze, seas of tasseled corn that wave in the breeze, 100 varieties of deciduous trees that mute the heat of the sun’s rays in sweating weather, and prairie grasses and sky blue chicory that line country roads and highways.  It’s a simpler, less dramatic beauty in central Illinois than that of the Sangre de Cristo Mountains but no less deserving of wonder and admiration.  When my spirit hurts and world-weariness threatens to overtake me, a walk in Washington Park soothes me.  My favorite walking meditation involves a study of the park’s trees.  As I walk along the pedestrian lane, I focus on the vast array of designs, textures, and colors of bark, notice the different shapes, sizes and colors of leaves, and look up into the branches that reach toward heaven.  It never fails to take my mind off of whatever worries are plaguing me at that moment.

Ah, but I have drifted off topic.   “What is the topic?” you ask.  The BIG topic is my CML relapse, what the side effects of it were, and the meat of the story, why it happened.  But as I tell my story, I find lots of subplots are popping up.  Who knows – by the time I get to the end my story, my BIG topic might even change. For now it’s how I came to change doctors.

I believe I arrived in Santa Fe on Monday, and Holly, the nurse practitioner at Barnes, had promised to call me back on Tuesday.  Waiting for that call was harder than waiting for the phone call a girlfriend had told me was coming from Carl Rosenberg in 9th grade.  He was going to ask me to the spring dance, she said, and I was all ajitter waiting for that black rotary landline phone to ring.  The difference between the two calls, besides the obvious ones, was that Carl’s call actually came, and we went to the dance together.  Holly’s call never came – not Tuesday, not Wednesday, not ever.  At least Carl had the courage to tell me when he was dumping me.  He said he didn’t want to corrupt me (naturally he was kind of a bad boy), so I corrupted myself, but that is definitely a different story.  Unlike Carl, Holly just abandoned me. I was in medical crisis, she knew it, and she did nothing to help me.  To this day, I get a lump in my throat that acts as a cork for the primal rage that wants to scream in her face, “WHAT THE FUCK, HOLLY!  HOW COULD YOU DO ME LIKE THAT?”  Acting on that impulse would probably get me three hots and a cot in the South County jail though, so I will keep on stifling that anger.

That evening, when the workday was over and it was clear no one from Barnes was going to call me that day, Rod and Renee talked through my options with me.  I certainly could call Holly and Dr. Cashen on Wednesday and ask what the game plan was, but my faith in their desire and ability to get my CML back under control without turning me into a giant burning hive was waning.  Instead, I went online and did some research of other institutions’ blood cancer programs, chose two, Mayo Clinic and Northwestern, and submitted online requests for an appointment before I went to sleep Tuesday night. Mayo Clinic called me early Wednesday and scheduled an appointment for me only three weeks out.  Northwestern called me on Thursday but I decided to stay with Mayo since I already had an appointment.  With HOPE for a medical resolution fending off FEAR and the rash abating more with each Sprycel-free day, I relaxed a little.  The question of what my cancer was doing while I was off the chemo niggled at me some, but I tried to stay away from that line of thought and embrace each moment.

On a sunny early summer morning the three of us took in the farmer’s market and a university art studio.  Another day, Renee and I visited the International Museum of Folk Art, a museum I will never tire of, and ate lunch at a patio restaurant.  Another morning we wandered around old Santa Fe and the Palace of the Governors where Native Americans sell their handmade jewelry.  Then Rod went home, and Renee and I spent the afternoon taking in galleries, kitschy shops, and second-hand stores. One morning I woke to find Rod had stopped after his workout to pick up breakfast treats, blue corn blueberry lavender donuts from Whoo’s Donuts.  They are bar none the best donuts in the world!  I had a hard time being polite and eating only my share.  Not once in the entire week did I eat average food, whether we were eating in or dining out.  I imagine average restaurants, with the exception of ubiquitous chains like fast food restaurants, Red Lobster and Smoky Bones, die quickly in Santa Fe because there are so many exceptional places to eat.  We ate homemade pizza, steamed artichoke hearts, and kale salad on the patio at sunset on the mountain.   We ate a fabulous dinner at La Plazuela one night, and on another celebrated my cousin Cally’s birthday at Izanami, a Japanese restaurant on the property of Ten Thousand Waves resort.  The setting was lovely, the food divine, and the company even better.  I probably gained a few pounds eating my way around Santa Fe, but I don’t regret a single bite.

When I’d worn out my welcome, I climbed back aboard my CRV and headed for home, rather, the house I was living in.  If “home is where the heart is,” then Rochester, IL certainly was not home.  It was shelter from the elements, but some days a tent in a blizzard would have been warmer than that house in the summer of 2017.

 

 

 

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.

 

 

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.