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.

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

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