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!

 

 

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alicesuearmstrong

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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