They told me I was dying: Why doctors' words matterI’ve often thought about that day and why I persisted in the face of such a dire diagnosis, given so casually. By Kerry Kriseman
A year and a half ago, I was lying on a California emergency room medical table when I first heard I was going to die.
While one doctor probed me with a needle to extract thick, yellow turbid fluid from my abdomen, a gynecologist hovered over me and delivered the news: I probably had 7 to 8 months to live.
“Oh my God. No,” I said.
I was a 51-year-old who had only been sick once in the last 10 years. If anything, I had skated by in life on my good health, and luck. The information didn’t match my self-identity. It all seemed so wrong.
“Patient is appropriately shocked and in disbelief,” read my medical notes from that day.
“Fuck this shit,” I told my husband hours later.
I wasn’t ready to die. Thankfully, I didn’t believe her.
Do you love our work? Give us a tip:
LOVE OUR WORK? GIVES US A TIP:
I’ve often thought about that day and why I persisted in the face of such a dire diagnosis, given so casually. I thank my thick skin from being a political spouse; my husband, Rick Kriseman, is finishing his second term as the mayor of St. Petersburg, Florida. I thank my faith. And, I thank my privilege. It’s easier to fight when you have better-than-average health insurance. I never worried about paying for my care.
As a battle-worn first lady, I know words matter.
And, I know there are better words health care providers can use to speak to patients.
Looking back at my treatment by a handful of doctors from California to Florida, too many of the words used to describe my illness and my prognosis were callous. Some could have even been considered harassment.
The gynecologist in California prematurely assumed I had stage 4 ovarian cancer, a terminal diagnosis that she had no business making with the minimal information she had about my condition. I didn’t learn I had treatable stage 2 cancer until I had surgery two weeks later.
And, in combination with surgery, I did treat it with six months of chemotherapy and radiation.
The experience changed me. My illness thrust me from healthy to sick. But my interaction with physicians transformed me into an advocate. In addition to writing about my experience, I am working with the Ovarian Cancer Research Alliance to advocate for more research funding, and to improve treatment disparities among various populations.
Through this work I realized one reason why I got a bad diagnosis: ovarian cancer is deadlier than many others because there’s no reliable test for it.
That fact, combined with the size of my tumor, led the gynecologist to believe my situation was worse than it was. In some ways, her mistake is understandable.
But there’s no excuse for diagnosing me like that, when I was vulnerable, without my husband present.
This is an area where doctors must improve.
Patient comfort is critical to health outcomes. Yet studies show doctors aren’t great at communicating with their patients, and that patients wish they were better. A large 1998 survey found that while 75 percent of orthopedic surgeons believed they communicate well, just 21 percent of their patients agreed.
Better communication is also a no-cost way to improve patient outcomes. Patients already fall off from treatment about half the time. When their doctor effectively communicates, they can be more than twice as likely to stick to their medical program.
A 2012 study came to a similar conclusion: “To help patients help themselves is the key to success.” The translation? Get patients to buy in on their care. How? Comfort them, build rapport. Better communication and empathy are partially why patients prefer nurses to doctors. And not coincidentally, when nurses are involved, patients have better outcomes.
I had little comfort from and even less rapport with some of my docs.
When I gained a few pounds, shortly before my 50th birthday, I never thought I could be seriously ill. I was healthy. I never caught the many colds my husband had throughout our years together. I had yearly physicals, pap smears and mammogram screenings. I took vitamins daily and exercised regularly.
I excused my burgeoning belly on perimenopause, or on falling behind on my exercise (or on Dixie, the boisterous Labrador we were pup-sitting, stepping on my stomach).
At 51, two weeks before I was hospitalized in California, I had my first colonoscopy, which turned up diverticulosis. The doctor suggested I add fiber to my diet. I was given a piece of paper with about 30 foods to eat and 30 to avoid. I figured that would cure my bloated belly.
Fifteen days later, during a trip for my son’s golf tournament in Pebble Beach, I was kneeling over the toilet in our Monterey, Calif. hotel bathroom, holding back my hair as I vomited repeatedly into the toilet.
Less than 24 hours later, I was undressing and fumbling with the tie on the back of a hospital gown at the emergency room at a local hospital.
I thought I had an illness that would be remedied with antibiotics, so I was completely unprepared for what the doctor told me after running tests on my abdomen.
“You have a 20 cm tumor on your right ovary."
A tumor half the size of a bowling pin? She might as well have been telling me what she had for lunch. The words rolled off her tongue, but they took my breath away.
I was in an emergency triage room with Rick when I got the news of my tumor. A few minutes later, a male nurse wheeled me to another floor, where they released the fluid from my abdomen, while Rick waited by himself in the room.
As I lay naked on the table with a needle in my side, the hospital gynecologist on call walked into the room.
“I just left your amazingly handsome husband,” she said.
That’s code for, “I don’t really have anything good to tell you, so I’ll distract you with compliments.”
She told me she was sorry about the tumor. I asked if it was really that bad, and if it meant that I had cancer. I was desperate for words that might tell me that the news I’d heard only 30 minutes earlier wasn’t really so dire.
She asked how many kids I had, how old they were, how many live births I’d had and whether I’d ever taken oral contraceptives.
None of my answers could have told her anything that would have led her to say what she said next: I had ovarian cancer, and I probably had 7 to 8 months to live.
When I did finally see Rick back in the triage room, I learned the gynecologist had left him shaking and with a folder of paperwork on ovarian cancer. How’s that for bedside manner?
“I’m not ready to die,” I told Rick.
I kept asking him, “Do I look like someone who is going to die?” He patiently and affirmatively answered, “No, you aren’t going to die,” and “No, you don’t look sick.”
I refused to believe that I would die within the year. Tumor my ass, I thought.
The callousness, recklessness, and indifference from the doctors in California made me skeptical. My mom had survived uterine cancer. I knew they couldn’t make a diagnosis without first performing surgery.
My first reaction was to double down, to fight. Political life made me tough. And, I can afford to fight — I have the resources, the time, the support, the energy.
But how many people don’t have those resources? What happens to them when they’re told they have a life-threatening illness, like I was? It haunts me.
I prayed for strength, faith, and positivity. One week later, I met with my mom’s gynecological oncologist in St. Petersburg.
The nurse quickly called me to a waiting room.
“We’re going to get you all better,” she said.
I was more comforted by those seven words than by anything the California doctors had told me. Maybe this is not that big of a deal, I thought.
After taking my history and vitals, she left the room for a few minutes. When she returned with the doctor, she was all business. No small talk, just questions.
“Did you go to California like this?” the doctor asked. I felt embarrassed, as if I should have known something was wrong before I boarded the plane. His questions demonstrated to me the level of denial I was in about my health.
“Did you just think you were gaining weight?” he asked.
Within 30 minutes, I had a surgery scheduled. I was told that in eight days, my ovaries, uterus, lymph nodes and omentum, a useless fatty lining of the stomach, would be removed. Laparoscopy was not an option. I was cut from my naval down to my pubic bone, about eight inches.
If the surgery was a success, I would be cancer-free within three hours, spend four days in the hospital, then six weeks recovering and preparing for four-and-a-half months of chemotherapy followed by five weeks of radiation.
I was grateful that the doctor mentioned chemotherapy and radiation. It indicated to me that my cancer was treatable, the opposite of what I was told in the hospital in California.
As I prepared for surgery, I told myself, “I love the Lord, and the Lord loves me.” That’s what the priest at my church told himself before surgery for stage 4 lung cancer. So that’s what I repeated, until I woke up, with Rick by my side.
“You’re a rock star,” he said. Rick told me the doctor was able to remove every trace of cancer he saw.
Rick had written down everything the doctor said, including the best words: “I believe your wife will be completely cured.”
As a first lady, I realize I gave more thought to my words than my doctors ever did. Instead of worrying about my health, I was concerned about whether the public would learn that the mayor’s wife was sick. I was afraid people would question whether my husband could perform his duties as mayor.
I chose to announce my illness in a statement I wrote and posted on my Facebook page. I gave no interviews where it could be left to chance to be misquoted.
But regardless of what I did, I couldn’t control the words that came out of my doctors’ mouths — even when they knew I was their mayor’s wife.
Five weeks after my surgery, I had a consultation with an oncologist in St. Petersburg. He was making a case for radiation therapy, and he intricately described every place my cancer touched.
Then he smiled, as if he were about to tell me a juicy secret.
“You’re going to look like you’ve had a Brazilian waxing.”
This is the first essay in our new edition, Talking To Our Docs. Subscribe to get our articles delivered for free to your inbox.
Thank you for sharing your story Kerry. Scary for you and Rick during that time in California, when it could’ve been handled differently. Your plan of care could’ve started off much more positive and with better communication, facts, and options. What an eye opening perspective on how words coming from a care professional can make all the difference. I’ve always trusted and taken to heart anything my doctors/nurses/PA’s etc have said and will continue to do so, but will consider what and how they say it more carefully.
Thanks so much for writing about your experience, Kerry. Your words touched me. I’m so sorry you went through that. I admire your move towards advocacy, and I think it’s sorely needed. No one should have to experience what you went through. I think you touch on something essential about the mind-body connection. Our thoughts have a significant impact on our physical health. I wonder if underestimating this connection has led to a lack of emphasis on the patient-clinician relationship and empathy training in medical schools. I can’t tell you how many times I’ve felt invalidated and abused by doctors who were insensitive, domineering, and hurried. Hopefully, one day, collaborative, client-centered care grounded in genuine empathic concern will be the norm rather than the exception.
I’ve known you Kerry for 20+ years. You are a rock star! Thank you for this honest and raw essay! Glad you are a fighter and advocate! We need a million more like you! XO
Thank you for writing and sharing this essay. Not only is it very thought-provoking, it is essential information for the health-care provider. I literally gasped when I read the final line of your essay. I am so glad that you are doing well.
I wish that all doctors would read the powerful message that Kerry shared in this piece that she work. And even more important this is something every medical student should read. One of the most important things doctors can do is to give their patient hope, even when a alarming medical situation is found. Doctoring is not only about curing but caring.
Thank you for sharing this important message. God bless you.