The Doctors’ White Wall

In his last days, my father passed the hours looking out the window at the sky from his hospice bed.  Over and over he said, “I just love looking at that blue sky.”  I’m not sure why those words hit me so hard, but every time he said them, I fell apart and had to leave the room to pull myself together.  Eleven months later, every time I see him in my mind’s eye, lying in bed looking out the window, his words echoing in my ears, the ache of missing him brings on the tears.  I let them flow until the aching in my heart subsides, for now.  Then I think about those eight little words, just a simple sentence, and appreciate the wisdom in them.  They are words to live by.

Intellectually, I know the key to happiness is living in the present moment appreciating the beauty of the clear blue sky or the magnificence of a dramatic stormy sky, whichever the case may be.  However, I have a poorly trained mind that pings around like molecules in boiling water.  One minute I am fretting about developing dementia and spending my last days warehoused in a “memory care” unit with a Nurse Ratched saying to me, “Now if you don’t want to take your medication orally, I’m sure we can find some other way to administer it.”  The next minute I am fuming about 2016 when Dr. Cashen and Holly made a medical error that changed the course of my life and did so with impunity.

When I am not in the moment, I don’t see the budding maple tree across the street though I am staring right at it.  I don’t hear the music of the chirping birds and the chattering squirrels though the sound vibrations move through my ears.  Though it’s madness to waste the present moment fuming, I have spent many hours that way throughout my years.  It is a habit I am trying hard to break, but I have to go there now in order to tell my story in the hope that others may escape being harmed in the American health care system.

On July 2nd, 2017, my sister Amy, who spends much of her life helping others get through hard times, and I loaded our luggage into my CRV, strapped ourselves in, and took off for Rochester, Minn. where the original Mayo Clinic campus is located.  Since Comer and Cashen had failed to solve my medication allergy problem and then abandoned me, I was in search of a solution.  In the month that I had been off the chemo, the rash had abated, but I knew each day without chemo was a day the cancer cells multiplied.  I prayed that the Clinic oncologist would have a cure for my allergy and save me from a bone marrow transplant.  In preparation for the appointment, I had contacted Washington University Physicians and requested that my all of my records be sent to Dr. Michelle Elliott at Mayo.  By the time I walked into her office, I fantasized, she would have a plan to desensitize me to the medication or put me in a clinical trial for a new medication.  Seven hours later we arrived in Rochester with Hope in tow.

On July 3rd, Amy and I climbed aboard a shuttle at the hotel that would drop us at the Clinic.  The city of Rochester caters to patients who come to Mayo from all over the world to be treated by teams of some of the smartest physicians on the planet.  Still, the shuttle could only get us to the front door of the main building; from there we had to find our way to Dr. Elliot’s office.  I was grateful for Amy’s presence for many reasons – a second set of ears and emotional support being at the top of the list – but her sense of direction was a close third.  I am like Wrong Way Feldman, the WWI pilot on Gilligan’s Island who inevitably flew in the wrong direction.  One would think an English teacher would know how to read signage and follow directions, but one would be mistaken in the case of Wrong Way Armstrong.  Whether on foot or in the driver’s seat, I somehow misinterpret the arrows or miss signs all together.  The Mayo Clinic campus is large but well-marked, and with Amy navigating, we had no trouble finding the hematology/oncology department.

We checked in and waited anxiously to meet Dr. Elliott.  Of course, I had Googled her, looked at her head shot and read about her credentials, so I knew she was Irish, graduated from medical school in Dublin, and wore her long blond hair straight through which her ears protruded, but none of my research prepared me for our first meeting.  When she slipped into the exam room, I felt like Gulliver meeting a Lilliputian for the first time.  She was a tiny sprite of a woman, maybe five feet tall on her tippy toes and all of 90 pounds.  At 5’8”, and 135 lbs. I felt huge and awkward.  She was cordial but not friendly and wasted no time on social niceties; like many physicians, she was all business.  She sat down on a stool, opened her computer, looked at me and said, “I have no idea why you are here.”  So much for my fantasy miracle cure.

Confused, I asked, “Didn’t you get my records?”

“I received some records,” she replied, “but they don’t explain why you are here.  You’ve been treated for CML since 2005 and the drug seems to have worked well for you, so I don’t understand why you are here.”

“Don’t my records tell you about my rash and the allergy I have developed to the medications?” I asked.

“No,” she said, and I had my first inkling that something was rotten in the City of St. Louis.  “Why don’t you tell me why you’re here.”

So I went through the whole story.  I told her I had been granted a chemo break in March 2016 and was still undetectable when I went back to Siteman in June for blood tests.  She interrupted me and asked, “You were off medication without a BCR-ABL for three months?”

“Yes,” I answered.

“Why weren’t you put in a clinical trial and tested each month?  That’s the standard of care,” she said in an almost accusatory tone.

“I don’t know,” I answered.  “That’s just what my doctor did.”

She frowned and shook her head.  “Okay, continue.”

“When I returned in September, the doctor could tell from my CBC and an enlarged spleen that I had relapsed.  She put me on 400 mgs. of Bostulif a day.  That initially dropped my numbers, so after two months, she reduced it to 300 mgs. a day because the side effects were terrible.  But then my numbers started to climb again, so she bumped it back up to 400 mgs.”  Dr. Elliott listened intently and took notes as I told her my story.  “Then on Jan. 1, 2017, I woke up with big red splotches on my face.  I thought at first that it was a reaction to the crab legs I’d eaten the night before, but it turned out to be an allergic reaction to the medication.”

“How was that determined?” she asked.

I told her about my numerous trips to my GP, Prompt Care, and the dermatologist, all the salves and lotions they had tried, and the long months of taking heavy doses of prednisone.  “Every time I finished the prednisone, the rash returned almost immediately.  Finally, Dr. Cashen decided to put me on 50 mgs. of prednisone a day and then slowly wean me off it to desensitize me to the Sprycel.  But as soon as I was weaned, I broke out again.”

Dr. Elliott shook her head and frowned again.  “Prednisone doesn’t desensitize,” she said.  “It just masks the symptoms of the allergy.”

My head almost exploded.  “You mean I took steroids that made me fat, hairy, and crazy for months for no reason?”  She just reiterated that prednisone just masks the symptoms of the allergy.  I have learned that doctors do not criticize the work of other physicians unless they are being paid big bucks to testify in malpractice cases.  Law enforcement has its blue wall; the medical community has its white lab coat  wall.  I looked over at my sister.  Her expression told me that she too was appalled.  I’m not sure why, but having someone get angry with me and for me when I have been wronged feels really good.  There’s some sort of validation in it that comforts me.

I turned back to Dr. Elliott and finished my story with the fact that Holly had never returned my call, and that I had lost faith in her and Dr. Cashen.  Not only did they seem not to know what to do next, but neither did they seem to care much.  “That is why I am here,” I said.  “I’m trying to avoid a bone marrow transplant.  Are there any clinical trials going on for new medications,” I asked.

“No,” she replied.  “I’m going to set you up for some tests, and I want you to see an allergist and an immunologist.  You said you used to tolerate Sprycel well?”

“Yes.”

“But now you break out in a rash when you take it even in small doses.”

“Yes.  My hands swell up like lobster claws, turn bright red and hot, and any heat source burns like I’m holding my hand in fire.  Since I’ve been off medication for a month, it’s mostly cleared up, but a little of the redness remains,” I said as I showed her my hands.  “I also get an itchy red rash all over my face, neck, and chest.”

“Well, we need to find a way to desensitize you.”  She said these words with confidence, as if there was no doubt that desensitization could be accomplished.  Hope surged through my body, and I looked at Amy to see if she was as encouraged as I was at the doctor’s words.  Amy gave me a thumbs up.

When I stood up, to leave, I groaned and mentioned in passing that my thighs and hips were killing me and I was walking like an eighty-year-old woman for some reason.

“That’s the prednisone.  It causes muscle wasting and deterioration,” she said matter-of-factly.

Again, anger surged through me.  “So, the prednisone that I took for no reason not only made me fat, hairy, and crazy, but also weak, huh.  That’s just great.”  Dr. Elliott didn’t comment.

Although I was angrier than ever at Cashen and Comer when we left Dr. Elliott’s office, I was also feeling very optimistic about a transplant-free future.  Amy too was hopeful.  We decided to eat a celebratory dinner at an Olive Garden, and over salad and breadsticks and pasta, we shared our impressions of Dr. Elliott and Mayo Clinic.  So far, both earned top ratings.  However, 72 hours later, Fear would return and take Hope’s seat on the ride home.

Joy and Grief Remind Me I Am Alive

Battling cancer can be a very lonely experience, even for people who have big families and lots of friends or celebrities who have millions of fans around the world, like Alex Trebek.  I mean, no one can hide you from the Grim Reaper, and the best oncologist in the world can’t save a cancer patient from an aggressive and incurable form of the disease.  Feeling fearful is a natural reaction to facing our own mortality or that of someone we love.  The problem is that many of us don’t know how to cope with fear, so we end up giving it enormous power by trying to push it away.  Unspoken fears fill the space between the sick and the well pushing them farther and farther apart until they inhabit different universes.  When people confront the possibility of losing the cancer battle and the dying feel free to talk about their transition to the next realm, Fear loses some of its power.  That’s not to say that the pain of loss will be diminished by talking.  Human beings who love, hurt and grieve.  Trying to avoid the pain of loss just creates more suffering.

Born with a sensitive nature that I had no idea how to manage, I suffered from chronic heartache as a kid and got stuck in perpetual mourning.  I mourned the birds that died when they flew into the picture windows of the house.  I cried when a pet hamster and gerbil died in the night, and I found it belly-up in its cage in the morning.  I bawled when friends I adored moved away never to be play “In The Giant’s Tummy” again.  But when I really snapped, I think, was in 4th grade when mortality became real to me while sitting at a library table in science class at Butler Elementary School.  We were watching one of those reel to reel films that grew brittle and broke and had to be spliced back together at least once during every showing.  Back in the day when Pluto was still a planet, Our Mr. Sun, starring Eddie Albert and Dr. Frank Baxter, was a science class staple.  Bored with facts about hydrogen and helium, I was probably daydreaming about which boy in class I would marry when I heard Eddie Albert ask Dr. Baxter, “How long before he runs out of this here hydrogen fuel?”  I snapped back into the present.  Run out?  The sun is going to die?  Then we will all die!  I looked around the room at the other kids.  No one seemed to be alarmed.  Most of them just looked bored, but I wanted to scream, “Hey, didn’t you guys hear what he just said?  We’re all going to die!  So what if it’s 5 billion years from now.  We’re gonna die!!!”  I think at that moment, Fear took up residence with Grief in my heart, and together, they ran my life for the next thirty years.

I had no tools for coping with Fear and Grief, or any other emotion for that matter, so I stuffed my feelings and numbed out using whatever I could grab at any given moment: sugar, nicotine, alcohol, drugs, relationships, or shopping to name a few.  Eventually, these diversions no longer worked.  Dogged by chronic hangovers and haunted by a long trail of failed relationships, I reached my breaking point.  I was 38 years old, and I wanted to die.  Actually, that’s not exactly true.  What I wanted was the pain of the hopelessness that is depression to stop, and I thought death was the only thing that could kill it.  Fortunately, I lacked the courage to commit suicide.  Instead I sought help, made some changes to my daily habits, learned some strategies for coping with my sensitive nature, and slowly, one day at a time, recovered from a hopeless state of mind and body.  Then cancer came calling.

It’s ironic that just when I was learning to really live and enjoy my life, I was diagnosed with a potentially fatal disease.  In 2005, the average survival time post diagnosis for chronic myelogenous leukemia was five years.  I indulged in a thorough freakout for a few weeks.  I was a mere 44 years old and had only begun to get my head together, and now I was facing a bone marrow transplant, a process that cured some, killed some, and left many with life-long debilitating health problems.  Then I learned about Gleevec, a miracle drug for CML patients that had been fast-tracked by the FDA for approval in 2001 because of its life-saving potential.  The drug was so new no long-term data on survival rates had been collected, but it appeared to be helping people avoid transplants and extending their lives by years.

Within a short time of diagnosis, I started taking the daily oral chemo.  While the side effects were unpleasant, serious fatigue, leg cramps, and diarrhea to name a few, I was lucky; the medicine did control my cancer.  Still, I sometimes plop on the pity pot and whine about the limitations imposed on my daily activity by the chemo that I will be taking for the rest of my days.  When those days come around and I start singing “Gloom, Despair, and Misery on Me,” I know I need an attitude adjustment.  The other day I Googled “world’s population” and learned that 7,714,576,923 people currently inhabit Earth.  Then I searched “access to health care.”  In 2017, according to the World Health Organization, half of the world’s human beings lacked access to basic health care services.  For the very old, the very young, and the infirm, a simple case of diarrhea can be a death sentence, yet these people cannot get a dose of Immodium to save their lives.  In contrast, I have health insurance that pays most of the costs associated with regular trips to the oncologist and the $60,000 annual cost of my oral chemo.  I am blessed.

Another cancer-created situation that sometimes gets me down is living on disability.  Medical events of 2016-17 robbed me of the little physical stamina I had left after 11 years of cancer treatment and intensified my chemo brain so that teaching became too much for me.  I had to go on disability.  So now, the last four years of my teaching career which should have been my most lucrative years of teaching and the ones upon which my pension would be based are reduced to $28,000 a year, before taxes and insurance.  Again, I needed to get some perspective on my situation and turned to Google.  Nearly half of the people on Earth live on $2.50 or less per day.  Almost one fourth of all humans live without electricity (dosomething.org).  In contrast, I live on $76 a day which is enough to scrape by and keep the lights on.  I am blessed.  Still, my monkey mind often pings around with thoughts about my own selfish wants and needs and petty grievances.  When a real loss occurs in my life, such as the death of my elderly father last spring, my mind screams at all of the people busy living their lives, “HOW DARE YOU SMILE AND LAUGH! DON’T YOU KNOW THAT I AM SUFFERING? CAN’T YOU SEE THE PAIN IN MY FACE?”  Never mind that they are total strangers who just happen to be at the grocery store or the gas station at the same time that I, Alice Sue Armstrong, am there.  The world should take notice of my grief, dammit!  I am of sounder mind than I was at 38, but I still have moments.

I know it’s not rational to think this way.  What I don’t know is if I am the only one who experiences grief this way.  Is it human nature to want the world to stop and acknowledge my pain, or am I more self-centered than the average human being?  And does it even matter how others react?  After all, my thoughts and feelings create my reality.

Over the last 17 years, I have learned a few things.  1) Painful emotions will not kill me.  2) I must experience grief in order to move past it.  3) Without knowing pain I can know no joy.  However, I can’t always differentiate between processing grief and wallowing in self-pity.  When I can’t see where I am, I have to seek help to figure it out.  Sometimes I turn to a friend, sometimes a counselor, and other times literature.  One benefit of having been an English teacher for almost 30 years is the exposure to great minds I may have missed if I’d stuck with accounting in college.  One of my favorite units to teach in American lit was transcendentalism.  Ralph Waldo Emerson’s essay “Nature” is a glorious read any time, but when I am struggling with some sort of pain or misery, I reread parts of “Nature” and soak in his wisdom.  Emerson writes, “In the presence of nature, a wild delight runs through the man, in spite of real sorrows. . . In the woods, we return to reason and faith. There I feel that nothing can befall me in life, — no disgrace, no calamity, (leaving me my eyes,) which nature cannot repair. Standing on the bare ground, — my head bathed by the blithe air, and uplifted into infinite space, — all mean egotism vanishes. I become a transparent eye-ball; I am nothing; I see all; the currents of the Universal Being circulate through me; I am part or particle of God.”  Walking in a park or the woods, hunting sea shells on a beach or canoeing down a river, reminds me that I am not the center of the universe.  I am not apart from Nature but a part of Her and the great whole of existence.  Spending a few hours away from civilization looking up at the infinite night sky or out at the vast ocean helps me to put my life’s events into perspective.  So in June 2017, when my monkey mind chattered incessantly about the reappearance of my chemo rash, I headed for the Grand Canyon hoping Her magnificence would silence Fear, for at least a little while.

At a gas station on the edge of Truth or Consequences, New Mexico on a mild June morning, Renee and I say our goodbyes.  She is headed home to Santa Fe, and I am headed for Williams, Arizona.  Originally, I had planned to take a leisurely scenic route to the Grand Canyon, but I revised that plan.  First, I am sick and tired of driving.  Whacked out on massive doses of prednisone when I planned my trip, I considered only where I wanted to go, not how long it would take me to drive there.  So there’s a tip for readers.  Never make travel plans while taking steroids.  I had also entertained romantic notions about seeing charming mountain and desert towns in the Southwest, but as I discovered driving across Northern Texas, quaint small town America with Mom and Pop diners is just as dead in the Southwest as it is in Illinois and Missouri.  The towns I drove through ranged from small groupings of trailers where a few people lived in grinding poverty to a handful of dilapidated structures completely abandoned to birds and vermin. Gas stations were scary miles apart, and being stranded with an empty gas tank on a little-traveled road in the desert wind and heat does not strike me as an exciting adventure.  Finally, the sun blaring through the windshield felt like scalding water being poured on my fingers and the backs of my hands where the chemo rash had reappeared.  Finding a place to hold the steering wheel where the sun didn’t shine on my skin was tricky, so I wanted to get to Williams as fast as I could.  I took U.S. 60, to I 40 where the speed limit was 75.  I figured I could drive 84 without getting a ticket, and I hauled ass all the way to Flagstaff where I hit heavy traffic.

By late afternoon I arrive at my motel in Williams, check in, and take a stroll down Route 66.  While this six block stretch of town is definitely touristy, it is also quaint.  The locals have been wise guardians of history maintaining the original architecture of the buildings, some of which are constructed of flagstone from nearby quarries.  I contemplate my options for dinner and choose Rod’s Steakhouse despite the fact that I don’t eat red meat.  It’s the neon sign in the shape of a steer that wins me over.  I receive excellent service and eat a delicious shrimp dinner.  I strongly recommend Rod’s to anyone going to Williams.  With a happy belly and satisfied taste buds, I leave the restaurant and walk across the street to my motel room for a good night’s sleep.

I wake the next morning, excited about the day ahead.  On the recommendation of a few friends, I had decided to take the train up to the southern rim of the canyon rather than drive.  I heard parking can be difficult and the trek from the lot up to the rim arduous for a medically challenged 55 year old.  Besides, I think, on the train I will be able to enjoy the scenery on the way up instead of focusing on the road and the vehicles all around me.  Not long into the trip I regret my choice.  The mountain scenery consists of pine trees, brush and cactus.  And the train chugs sloooooooowly up the mountain.  For a moment I think I am on The Little Engine That Could, but it can’t.

To prevent boredom, an attendant who is both a story-teller and historian staffs each car.  The attendant in my car is a perky young woman in her early thirties who teaches kindergarten in Phoenix 9 months of the year and spends her summers working on the Grand Canyon Railway.  Her lively narratives are punctuated by the appearance of guitar-strumming cowboys, gnarly-looking train robbers, criminal-stalking lawmen, and photographers offering to take the family’s photo and sell it to them for a pretty price. The woman with the camera asks every group in the car if they would like their photo taken, but she does not ask me.  In fact, she doesn’t even look at me.  I guess my solo female presence makes her uncomfortable (I am the only person riding the train alone today) or she assumes that a lone traveler will not be interested in commemorating the occasion with a souvenir photo.  She was right about that of course, but feeling invisible was a strange sensation.

Two hours and fifteen minutes after departing Williams, we pull into the station at the southern rim.  By car, the trip is only an hour and a heck of a lot cheaper.  However, as I climb the steps from the depot to Grand Canyon Village, my train regret vanishes.  Between the thin air at the altitude of 7,000 feet and my cancer-induced fatigue, I barely make it up the first set of steps.  People a few decades older and lots of pounds heavier than I stroll easily past me. Mildly embarrassed by my lack of physical stamina, I find a rock to perch on and catch my breath before I tackle the next flight of stairs.  Later I learn that the heavy dose of prednisone I was on for months destroyed a lot of my muscle mass, but at the time I thought I was just pathetically out of shape.  Anyway, if I’d driven I may not have made the long walk from the parking lot to Grand Canyon Village.

Now, one might think that after driving 1,900 miles and riding on a train for 2.25 hours to see the Grand Canyon, I would head directly for an excellent viewing spot, but that is not what I did.  Instead, I made a beeline for the El Tovar Hotel dining room for sustenance.  After eating a big salad and an order of fries, I felt my strength was somewhat restored and then went outside to explore.  The view was worth every mile I drove.  Neither word depictions, nor photos, nor videos can do justice to the Grand Canyon, so I won’t even try to put my experience into words.  What I can say is that Ralph Waldo Emerson is right about Nature.  She can make you forget about your problems for a while and remind you that you are a part of something much larger than yourself.  I took in the view from various spots, watched a troupe of Native American youth perform some stunning dances, and toured the shops.  It was a fabulous day.  Exhausted on the return trip, I dozed while the cowboys entertained the kids.  Someday I would like to return and drive the perimeter of the Grand Canyon.  It really is something to behold.

I spend one more night in Williams and then head for Santa Fe where I will spend a week in the mountains with Rod and Renee, two of my favorite people on Earth. There I will hit the trifecta of enjoying Nature, laughter, and love all in one sweet home.

Fear and Loathing in Truth or Consequences New Mexico

When the first signs of my chemo rash appear in Hot Springs, Arkansas, I pick up a companion for the rest of my road trip; her name is Fear, and she is a master story-teller.  She spins tales of doctors and nurses, hypodermic needles and IV’s, isolation rooms and ICU’s, stories as bleak as the landscape I traverse on my way to the next hot springs bath house in Truth or Consequences, New Mexico. Fear makes me promise that if I get graft vs. host disease from the bone marrow transplant, I will go to Portland where one of my brothers lives, and get the Kevorkian treatment.

Fear gabs while I drive through Northern Texas, a land of vast stretches of red dirt whipped through the air by relentless wind.  I travel for hours without passing another vehicle or seeing evidence of human life, just occasional herds of cattle.  Once I come upon a trio of cowboys, bandanas tied around their faces, fighting the wind-flung dust to fix a fence in the middle of nowhere. The poor cows have no such protection from that airborne dirt.  I imagine it cakes in their ears, eyes, and nostrils, and my heart hurts for them.  That anyone manages to scratch out a living in this inhospitable place is amazing to me.  I am way to soft to live in North Texas.

The color palette shifts across central New Mexico from shades of red and rust to muted greens, grays, and browns, but the wind remains the same, and the long stretches between abandoned towns.  Every time I have the opportunity to get gas I grab it because the next functioning pump might be 300 miles away.  I also learn to use the restroom at every opportunity.  New Mexico may have rest stops on its interstates, but none exist on U.S. 380, and unlike Illinois, where I can use a cornfield in an emergency, New Mexico waysides consist of prickly plants a few inches tall that provide no cover and might leave me with a souvenir in the derriere.  And while I often go hours without seeing another vehicle, I have no doubt that the minute I pull down my pants next to a cactus, a truck full of fence-fixing cowboys will crest the nearest hill, and in a rush to finish, I will lose my balance and get a bottom full of prickly pear pancakes.

Two long days of driving after leaving Hot Springs, I pull into Truth or Consequences.  It is only late afternoon, but the town looks nearly deserted.  On line, it looked like a quaint, thriving community of stucco houses painted bright colors, kitschy shops, and trendy cafes selling lattes and fresh-baked pastries.  In person, it looks like any other slowly suffocating small community where the young people with ambition leave, the young people without dreams smoke meth, and the old people wonder what happened to their beloved hometown.  I get out of the car, and grit my teeth while stretching through the pain in my hips and thighs.  For the past few days I have been slightly stooped like an 80-year-old woman because pain washes from my waist all the way down through my feet when I walk, something else Fear likes to talk about.  As I approach the office of the Pelican Spa, I look around at the cute little cottages and look forward to flopping on a bed and sleeping for ten hours.  The clerk hands me a key and gives me directions to my room.  As it turns out, I do not get one of the quaint cottages.  I am to be housed on the second floor of a two-story building a block away.

Back in the car, I follow the woman’s directions to a two-story structure painted bright pink.  When I pull to the back where the stairs are, only one other person is around, a young man who is clearly tweaking, walking down the sidewalk across the street.  He is talking loudly to himself and gesticulating wildly.  I wait until he is out of sight to get out of the car, grab my suitcase, and climb the stairs to my room.  I don’t recall ever being this tired before in my life.  Once inside, I turn on the air conditioner and get a jet stream of mold blown directly into my face.  Yuck! Too tired to complain about it to the clerk, I turn to the bathroom.  On the shower floor a two-inch bug, beetle or roach I do not know, lies dead on its back, all six legs reaching up.  I squat over the toilet to pee, lie down on top of the covers, pray for no bed bugs, and drop into a dreamless sleep.

A few hours into my nap, my stomach wakes me demanding to be fed.  The town is small, so I figure I can just drive around a bit and find someplace to grab a sandwich.  I am wrong.  The only place open is the brand new super-sized Wal-Mart on the edge of town.  Resenting “progress” but too hungry to dine on principles, I enter the monstrosity, grab a container of Sabra Supremely Spicy Humus, a box of crackers, an apple, and a giant chocolate chip cookie.  I eat the cookie on the drive back to the Pelican.  As I open the door, the moldy air rushes to greet me and my stomach flips, but I forge ahead.  There is no one on duty at the office in the evening, and I am too tired to move anyway.  After quieting my stomach with a few bites of food, I fall back asleep.  An hour later, something wakes me.  I’m not sure what it is.  Just as I begin to drift off again, the yapping of a chihuahua type dog wakes me, and it sounds like it’s coming from the room below me.  The cursing that goes through my head should not be recorded in print.  That goddamn dog yaps all night long, and I long for Seinfeld’s Newman to dognap the little fucker and ditch it somewhere miles away.

When the sun rises, I drag myself out of bed, sick to my stomach from breathing mold all night, sleep-deprived from a yapping chihuahua, and grossed out by the dead bug in the shower.  Stomping down the stairs hoping to disturb the sleep of the dog and its person, I vow to get my money back and get the hell away from the Pelican Spa.  I throw my suitcase in the car, peel out of my parking space throwing a little gravel at the building, and speed down the block to the Pelican Spa office.  My aunt, Renee, is supposed to meet me at the Spa this afternoon and spend the night in Truth or Consequences with me.  I tell the clerk about the mold, the roach, and the dog, and she gives me attitude!  So I tell her not to take my word for it but go check the room out for herself.  To her credit, she does and her attitude changes.  She offers to upgrade our rooms to the cute little cottages, Renee’s upgrade free and mine at no charge at all, and I accept.  It’s the path of least resistance, and I am tired of fighting, tired of fighting cancer, doctors and nurses, my husband, and most of all the rash.

Between the time I left Hot Springs and arrived in Truth or Consequences, the chemo rash reappeared on my hands.  Grasping the steering wheel, my bright red fingers burned when the sun shone on them through the windshield.  Renee arrives, and I cry as I tell her about the rash relapse.  We settle into our cottage rooms, and then I call Holly at Washington University Physicians to tell her about the latest development.  She instructs me to quit taking the Sprycel immediately, but beyond that, she had no idea what I should do because Dr. Cashen is out of town and won’t return until the following week.  I make her promise that she will call me Tuesday when Cashen returns and tell me what the plan is.  Thinking that a bone marrow transplant is imminent, I am hysterical while talking with Holly.  She has no words of comfort for me.  I hang up and feel overwhelming gratitude for Renee’s company.  She is one of my favorite people in the world, and the 24 hours I am with her, Fear will be muted, and I will enjoy the moments as they come.

Renee and I find our accommodations are better than my pink palace room but still far from ideal.  Decorated with vintage furnishings, the cottages are cute but have not been well-maintained.  As I try to close a curtain, the bracket that holds the rod falls out of the wall and the rod hits me in the head.  In her bathroom, Renee slips on a rug that has no pad on the slick tile floor and whacks her head on a cement shower base suffering a mild concussion.  Though we manage to laugh a lot despite our head injuries, we are glad to escape Truth or Consequences alive on a Saturday morning.  Renee heads north back home to Santa Fe, and I drive west towards Arizona to take a gander at the Grand Canyon.  If the majesty of one of Mother Nature’s greatest works of art can’t distract me from Fear’s chatter, then nothing can.

 

You want me to do WHAT?

Today I pick up my story on Feb. 27th, 2017 with a trip to the South County Siteman Cancer Institute clinic.

Plagued with a painful, unsightly rash and the worst headaches of my life, I am relieved to be only yards away from the South County clinic where I hope to get relief from my misery.  The clinic is housed in a brand-spanking-new building characterized by sweeping lines and walls of windows.  The cancer business appears to be a profitable one.  Once inside, I head for the check-in desk and Marge stakes claim to a couple of chairs.  Today the room is crowded, and since my appointment is a scratch-in, we are likely in for a long wait.

My mind wanders as I look around at the high ceilings, stainless steel fixtures, white walls, and glossy flooring.  The sleek lines, glass, and steel imbue the clinic with all of the warmth of the East Antarctic Plateau.  Although parking is free at this site, which is much smaller and easier to navigate than the Barnes Hospital office where I used to go, I prefer the old one.  On the 7th floor of a huge building across from Forest Park, the bone marrow transplant department shares the floor with other offices, so it is a very busy place.  Groups of comfy chairs and tables of half-worked jigsaw puzzles are scattered around the huge room.  Survivor messages of hope and courage sewn into quilts and glued on mosaics decorate the walls.  Sometimes a woman leads a therapy dog around the room to comfort patients and their loved ones.  Other times, massage chairs are set up and patients offered a free ten-minute neck and shoulder rub.  All of this helps to ease the tension that inevitably hangs in the air wherever cancer patients wait for the results of their latest scans and blood tests.  Maybe next time I will ask to seen at the Barnes complex.

Eventually, my name is called, and I am led to the next location of the hurry-up-and-wait game, the exam room.  The maze of hallways are all ultra white walls and glossy floors, and I feel like I should be wearing a straight jacket.  The nurse deposits me in a room, and tells me someone will be in shortly.  Sure they will.  As usual the temperature in the room hovers around 65, and I pull my coat around my shoulders.  This antiseptic room too is all white and stainless steel except for the blood-red plastic container hanging on the wall blaring BIOHAZARD WASTE!  I feel like a germ sitting here in this pristine environment knowing that disease-tainted blood is coursing through my veins.  To distract myself from my worries, I text some friends and scroll through the news on my phone.

Finally, Holly does the quick tap-on-the-door-and-enter routine.  Dressed in her white lab coat and carrying her laptop, she looks like a medical professional who knows what she’s doing.  I look to her with eyes pleading help me, but she avoids eye contact and busies herself with her laptop.  Once she brings up my file, she takes a look at my rash, tells me to take another two weeks off the chemo and then restart Sprycel at 40 mg. instead of 50 mg. and adds yet another round of prednisone.  I look at my records from the visit where she wrote, “I reviewed with her the pattern of her BCR-ABL activity of the past couple of years to emphasize the importance of staying on an effective tyrosine kinase inhibitor.  She is willing to resume the Sprycel and take it consistently in order to prevent relapse of the CML.”

Can you hear the steam blasting out of my ears?

Take a deep breath.  Ommmmmmmmmmmmmmm.   Anger will get you nothing but an ulcer. 

Holly devised her notes to imply that I had relapsed because I was not compliant with doctor’s orders.  Anyone who did not know the situation would read her notes and assume that I, the patient, had been non-compliant in taking my medicine and that was the reason for my “frank relapse.”  This note is an excellent example of what medical people who fuck up do to try to hide their mistakes.  I have never just quit taking my medicine without my doctor sanctioning a break.  Why? Because I want to live!  Yes, the last few years have been hard, and I have had moments when I felt like it was all too much to be borne.  I have experienced suicidal thoughts, but they were only thoughts because mixed in with all of the Comer-and-Cashen-induced anger, frustration, fear, heartache, and  physical misery are moments of beauty and love and grace that I would not trade for anything.  And I plan to keep experiencing all of life’s ecstasy and misery and everything in between for as long as I can hang on to this crazy ride on planet Earth.

I return home, and as usual, follow Holly’s directions.  The prednisone once again quells the rash.  On the 13th of March, I hold my breath and take 40 mg. of Sprycel and . . . the rash comes right back.  Again, I call Holly.  Again, I am taken off the Sprycel.  Again, I take prednisone.  I am Billy Murray in Groundhog Day.  In the meantime, any time I am off the chemo, the cancer cells replicate like rabbits, and the fear of a bone marrow transplant in my future looms large over today.

On March 5th, 2017, I return to South County and once again see Holly.  The rash is still with me, and I am miserable, yet her “Interval History” notes from that day say, “We went back to the Sprycel, but she also developed a rash since restarting the Sprycel at 40 mg. the rash is now resolving, and she feels better today.”  I flip to the next page of my chart and this is what she writes in the “Impression and Plan” section.  “We plan to start her on prednisone at 50 mg. a day for a week, then resume the Sprycel at 20 mg. a day and slowly wean her off the prednisone.”    If the rash were resolving, would she prescribe a massive dose of prednisone?

When I groan at the prospect of taking huge doses of prednisone, Holly looks from her computer to me, a fierce expression on her face, and scolds, “It’s a lot better than a bone marrow transplant!”  I feel weak for whining and slink out of the exam room.  Like the obedient patient I am, I fill the prescription for prednisone and begin taking 50 mg. a day.

On the steroid, I blow up like a tick sucking blood from a goat.  Pie . . . where’s the pie?  I need pie!  And anything else I can shove in my pie hole.  And sleep?  I have a vague memory of what it’s like to sleep at night, but my eyes are wide open as the dark hours tick by.  On the recommendation of a friend, I call Holly and ask for a prescription of lorazepam to help me sleep at night.  She obliges and the little white pills solve that problem, but soon I develop Cushing’s syndrome from all of the cortisol my body is producing.  The Mayo Clinic web site lists the following changes that result from Cushing’s:

  • Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face), and between the shoulders (buffalo hump)
  • Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
  • Thinning, fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Acne

I develop most of the above, and soon, I don’t even recognize myself in the mirror.  Acquaintances often don’t recognize me either.  One day I meet a friend at Incredibly Delicious for lunch.  The woman in line in front of me is a person I have known for years, yet she does not acknowledge my presence.  I wonder if I have done something to offend or alienate her.  Pushing that thought away, I tap her on the shoulder.  She turns and looks at me waiting for me to explain myself.  “Judy,” I say.  “It’s Alice.”  The reason she did not say hello was that she did not recognize me.  It’s a strange experience to be so physically changed by a medication that friends don’t recognize me.

For two long months, I take prednisone and Sprycel together.  The theory is that the prednisone will desensitize me to the Sprycel.  The rash does disappear, again, replaced this time by the moon face and buffalo hump, changes that I hope are only temporary.  In early June, I take my last dose of prednisone and prepare to celebrate with a solo car trip from Illinois through Arkansas, across Northern Texas, into New Mexico, and eventually to the Grand Canyon in Arizona.

My first stop is in Hot Springs, Arkansas.  Once upon a time, people believed that mineral springs could restore health to people suffering from all kinds of maladies.  I wanted to honor my recovery with a soak in an old-time bath house.  I leave the Buckstaff Bath House feeling a little euphoric, but as I walked down the sidewalk toward my hotel, that euphoria evaporates like the bath house steam.  The first symptom of my rash usually appeared as a ring of raised skin that tingled all around my lips.  I feel the tingle, run my tongue around my lips, and consider throwing myself into the street in front of a moving bus.  The rash is on its way back.

We Now Return to Our Original Story

Between Jan. 1 and Feb. 22nd, 2017, I go to the doctor five times about the hideous rash creeping from my face down my neck, chest, hands, and legs.  My general practitioner, dermatologist, and assorted Prompt Care doctors prescribe creams, salves, and steroids, but like Max Cady, the villain in Cape Fear, the rash just keeps coming back to life.  When the dermatologist determines the culprit is my cancer medicine, I call Holly.  Without seeing me, she switches my medication from Bosutinib back to Sprycel but at a huge dose for me, 70 mgs., and on Feb. 22nd, I take my first dose at bedtime.  The following is a post from my Caringbridge journal about that experience:

“Last week I took my new medication, 70 mgs. of Sprycel two days and experienced a clear toxic reaction. I’m not prone to headaches, but my head felt like I was Zeus giving birth to Athena. The rash I’d been fighting for 6 weeks continued to spread and burn like a wildfire across my limbs. And for a new delight, I added violent retching to the mix. On Thursday Feb. 24th, I called my oncologist’s office. Naturally, my doctor and her PA were at a conference, so I asked the nurse to leave them a message: “I am not taking that crap again! It’s killing me!” She said she would pass it along.”

Actually, I am really not all that opposed to dying at this point, but not because of the physical misery that engulfs me.  The worst pain is the emotional devastation of being totally rejected by my husband when I really need his love and support.  When I am at my sickest, I cannot eat or sleep, read or watch television.  I just toss and turn and moan and groan in my bed day after day.  On the other side of the bedroom wall, my husband sits in his office doing who knows what on his computer all day, day after day.  He doesn’t even pop his head in to see if I am still alive.  In the evenings, he makes himself some dinner, watches television and goes to sleep on the sofa.  One night, when my head hurts so bad I nearly called 911, he brings a plate of spaghetti into the room, drops it on the dresser top, turns around, and walks out without so much as a word.  The smell roils my stomach, and I drag myself to the bathroom for some dry heaves.  Yes, if the Grim Reaper takes me, I think, he will be doing me a favor.

One evening, I feel well enough to sit on the couch and watch television.  Suddenly, appropos of nothing, he says, “You know, you could sell that medicine you’re taking on the street for big money.”  Dumbfounded, I turn and look at him.

“What did you just say to me?” I ask.  He responds with a blank stare.  “What…do you think I’m floating high in the sky on opiates?  If I sold my chemo to some guy on the street promising him a good high, the next day he would hunt me down and shoot me,” I say.  My husband and I live in the same house and breathe the same air, but we inhabit far distant universes, and separate beds.

On Feb. 27th, my best friend, Marge, drives me to St. Louis to see Holly.  Whereas my husband treats me with indifference, Marge treats me with concern and compassion.  Never again do I take my husband to the doctor with me. In fact, he won’t be my husband for too much longer.

Holly looks at my lobster claw hands, instructs me to stay off the chemo for two weeks, and prescribes another burst of prednisone.  In two weeks I will begin taking 50 mgs. of Sprycel each day.  I wonder now if she felt any guilt when she witnessed my misery that day, knowing as she did that her mistake was cause of it.  I wonder if she had any trouble sleeping that night, or if she found a way to convince herself that she wasn’t to blame.

Looking back, I see I was surrounded by enemies and oblivious to that reality.  Okay, enemies might be a little strong.  However, I am not sure but that my husband would have been relieved, if not pleased, if I died.  The same goes for Cashen and Comer.  I was a problem for them too.  My husband was supposed to love me until death did us part, but he did not, and my medical team was supposed to do no harm, but they did! Are people ever what they seem to be?

Two weeks later the steroid has erased the rash once again.  Because I was on Sprycel for years without skin problems in the past, I am hopeful that I am back on the road to rash-free remission.  I pop a 50 mg. Sprycel, and to my horror, the rash reappears almost immediately.  Distraught, I call Holly to report this development.  She reduces the dose to 20 mgs, but that reduction does nothing to mitigate the rash.  It appears that now I am allergic to Sprycel, and I am scared.  There are only five drugs that treat CML, and I am now allergic to three of them.  A fourth one does not work well for me and the fifth is used only in emergencies because it has a high incidence of causing strokes.  If I cannot tolerate Sprycel, a bone marrow transplant, a grueling procedure which cures some people, kills others, and leaves still more patients with life-long quality-of-life thieves like graft vs. host disease, is in my future.  It appears to me that I am between the proverbial rock and hard place.  SHIT!

 

 

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.