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.