I looked away from the nurse as she wrapped the tourniquet around my arm and prepared the needle. Then I realized that I was the only patient getting blood drawn. Everyone else was receiving intravenous chemotherapy.
My neurologist referred me to this hematology-oncology practice on the off chance that my cryptogenic stroke was caused by a disease of the blood like lymphoma, leukemia, thalassemia or another clotting disorder.
“Just relax,” the nurse said as she punctured my arm.
I looked a little too closely at the chemo patients.
Don’t stare, I told myself.
As someone healing from illness, I knew that the only person I would want watching me receive treatment would be someone who loved me. So, I closed my eyes as the nurse changed the first of nine vials.
An hour before, I had been looking at a hematologist’s back as he feverishly typed my answers to his long list of questions into a computer.
“Date of last physical exam?”
“Before the hospital stay?” I asked.
“I saw my gynecologist two months ago.”
“My cardiologist put a loop recorder under my breast to check for arrhythmia.”
“Why’s that?” he asked.
“Because I had a stroke two weeks ago and nobody knows why,” I replied. “Do you want to take a minute to look at my test results?”
“No. Are you sexually active?”
“You don’t have to answer,” he said. “Brief history of chief complaint?”
“You want me to describe the stroke?” I asked.
When I talk about the most terrifying moment of my life, there’s a suspicion — felt as a roving tension between the heart and stomach — that makes me believe words conjure action, like a spell. So, I wanted to ask him how the narrative of my musculoskeletal failing, which is how I first experienced my stroke, would give him medical insight into the makeup of my blood, which was his area of expertise. But he was poised, hands on the keyboard, waiting. And, he was the expert. As far as I understood, I needed him. So, I took a deep breath and began.
“At 5:45 p.m. I got up from the couch to get dressed to meet a friend for dinner. As I was pulling my jeans over my knees, my body buckled underneath me and I tumbled to the floor. I tried to reach for the edge of the bed, but I felt like I was underneath a 400-pound bag of sand. Then — ”
He stopped typing, spun his chair around, and looked me straight in the eye for the first time.
“So you were lying on the floor with no shirt on and your pants pulled down?” he asked.
“That’s pretty funny. Can I tell you a funny story about being caught with your pants down?”
I stared at him, dumbfounded.
“It’s really funny,” he insisted.
I wanted to say: “What is wrong with you? Do I need to remind you that you are not at an f-in’ keg party?” But it didn’t seem like that would inspire him to help me, so I said, “OK.”
“My father is a bigwig lawyer, and he and my mother get invited to a lot of galas.”
As he spoke, I tried to mask my shock at the realization that the first time this doctor faced me was after he imagined me with no shirt on and my pants down.
“My mother got into the limo wearing nothing but her fur coat because she didn’t want to wrinkle her gown. As she was slipping into it, the valet opened the door and saw her half-naked! We all say he must have thought my father was trying to cop a feel. Isn’t that hilarious?”
“Comedy gold,” I replied.
He laughed as he swung his chair around, apparently proud of his delivery. I was relieved to be staring at his back again.
“Then what happened?” he asked.
“My husband came home and took me to the hospital,” I answered, intentionally cutting the story short to avoid any more dirty detours.
He finished typing and led me to the door where a young nurse greeted me. “Get her ready for a physical exam,” he said. Then he whispered something in her ear.
As I sat on the edge of the examination table, the nurse took my temperature and blood pressure. “The doctor has asked that you take off your shirt,” she told me. She held out a paper gown and said, “Open to the front.”
“Why does he need to examine me with no shirt on? He’s a hematologist,” I said.
She looked at me blankly.
“Does he do this with everyone?” I asked.
She shrugged, handed me the gown, and left the room.
He let me know that the most compelling part of my medical trauma, for him, is the fact that I was half-naked when it happened, I thought.
I took off my shirt and pulled the paper gown around my shoulders, open to the front.
He entered the room. The nurse stood at a distance from the examination table, leaning against a countertop, like she didn’t want to be associated with him.
He walked over to me and began gently touching my neck. I looked at my feet dangling below me like a child sitting at the dinner table in an adult chair.
Then he announced: “I’m going to do a breast exam. Lie down, please.” I looked at the nurse, imploring her with my eyes to answer the questions I had asked earlier. She looked away.
Two weeks prior I had a stroke and no one could tell me why. My neurologist insisted that I make an appointment with a hematologist. She recommended this doctor specifically, so I lay back on the table.
I averted my eyes from his face and tried to ignore his cold, clammy hands on my breasts. I looked at the popcorn ceiling tiles. What were they made of? Styrofoam? Asbestos? Polystyrene?
“OK. You can dress and meet the nurse to get your blood drawn,” he told me. Then he and the nurse both left.
I lay on the examination table. I put my warm hands on my breasts to remind myself that they belonged to me. There is a history of men treating women’s bodies like they are objects that they possess, and his hands had made an imprint of that history on my body.
I got up and ran warm water over a paper towel. I wiped my breasts with it to clean them. It just felt like the right thing to do.
When I was in the chemo suite getting my blood drawn, it was easier to stare at the cancer patients than it was to think about why the doctor pictured me naked, talked about his mother naked, and then touched my breasts, even though that exam didn’t appear to be medically necessary or appropriate to my condition. It was easier to be distracted with the treatment of others than to think about my own.
But as the nurse drew vial after vial of blood from my arm, I homed in on the fact that I was referred by my neurologist for blood testing, not by my gynecologist for breast cancer treatment. I reflected on the fact that the hematologist asked nothing about the results of my last mammogram. If he was interested in my breasts for some medical reason related to my stroke, wouldn’t he have wanted that information?
As the nurse filled the ninth vial of blood, a question looped through my mind: Are hematologist-oncologists even trained to give breast exams?
When I got home, I searched the internet for any evidence that there was a medical reason for a hematologist-oncologist to perform a breast exam. I found this, written by Dr. Maurie Markman, the president of medicine and science at the City of Hope cancer center: “Hematologic malignancies differ from other types of cancer because they develop in the body’s blood cells and may not form tumors. While some hematologic oncologists have expertise in treating solid tumors, most do not treat operable cancers such as breast cancer or lung cancer.”
I also discovered that the four pillars of medical ethics are beneficence, non-maleficence, autonomy and justice. One way that physicians can determine if they’re acting with beneficence is to ask whether an option and its outcomes are in line with a patient’s expectations of treatment. Since I was referred by a neurologist for blood testing after a stroke, the answer to that question, as it relates to performing a breast exam, would definitely be “no.”
People who cross boundaries often exploit power and those who need and trust them. Medical professionals are afforded a tremendous amount of power. Though patients need to trust their doctors, their doctors are not always trustworthy.
But what is trust exactly? The four pillars of medical ethics do not include trust. Maybe doctors, from an ethical standpoint, aren’t required to be trustworthy?
I can only say that I trusted that the hematologist, recommended by my neurologist, would not make light of my stroke, share sexual stories about his parents, or perform a breast exam without medical cause. For this reason, I never wanted to see him again.
Unfortunately, my insurance would not pay for another set of tests with a more trustworthy hematologist. The only way to get the results of the thousands of dollars’ worth of tests that he ran on nine vials of my blood was to schedule a follow-up with him.
So, I asked my mother to come with me to the follow-up visit. When she was a recent divorcee, she had famously told her new male boss that she did not need any man to hold a door for her. I hoped that her presence would keep the handsy hematologist in line. We planned that she would sit across from him, holding eye contact and asking questions, and I would sit next to her taking notes.
“I found nothing. Your daughter is incredibly healthy,” he told her.
“Wonderful,” said my mother.
“But,” he said, “we can do a follow-up in six months to see if anything changes.”
“Why would we do that?” she asked.
“I’m committed to helping you on this healing journey,” he replied. “She’s too young and healthy to have one stroke, and we don’t want her to have another.”
“Thank you, doctor,” she said, “but we won’t be needing your help on our healing journey. We haven’t found your presence to be particularly healing.”
Then we both stood up, turned our backs to him, and left.
Courtesy of K.Page Suart Valdes
Later that day I researched New York state’s bill of rights for hospital patients. Item No. 9 states that patients should receive “all the information that you need to give informed consent for any proposed procedure or treatment.” I would have loved to hear the doctor’s explanation as to why he felt it medically necessary to examine my breasts.
Item No. 11 states that patients may refuse treatment “and be told what effect this may have on your health.” I wish I had said: “No, I will not consent to you examining my breasts. You are a hematologist, and I’m here because I had a stroke. My breasts were not involved.” I wonder what his explanation would be for how this procedural refusal would affect my health.
In the future, I’ll try to speak up when I don’t have all of the information I need to give informed consent for a procedure or treatment, and I’ll try to remember that I can refuse any procedure or treatment that I am not comfortable with. I’ll even try to remind the doctor of the four pillars of medical ethics and the patients bill of rights.
However, the process of healing weakens not only the body, but the mind and spirit. Being both a vulnerable patient and one’s own health advocate is a split in consciousness that’s hard to manage. After having a mysterious stroke, I was exhausted and terrified — not exactly in warrior mode.
Maybe that’s why I didn’t report him directly after my experience. A friend who works in the medical field told me that if I did, the doctor would likely lie and say that it was medically necessary to physically examine the lymph nodes around my breasts. I imagined being pulled into a medical malpractice suit while trying to heal, and decided against it at the time.
No one should have to prepare for a doctor’s appointment as if they were going into battle. But the medical system is full of people who have tremendous power and very little oversight, with many visits involving only the patient and the doctor in an exam room. In the future I’ll try to invite someone who truly loves me to join me at every important doctor’s appointment. I shouldn’t have to go to these lengths to feel safe with a doctor, but being both a vulnerable patient and a health care warrior is the position that too many of us are put in.
I can’t help but wonder, if I had brought my mother to the first visit, would I have needed her at the second one? I’ll never know, but I’m proud to say that she recently sat with me while I filed a complaint against that hematologist.
Note: Some details have been changed to protect the identity of individuals mentioned in this essay.
K.Page Stuart Valdes is an award-winning filmmaker, writer and educator. She is currently working on a feature film and a collection of essays titled “Cryptogenic: How I Survived a Stroke No One Understood During a Pandemic No One Understood.”
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