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?”
“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.