By Helen Epstein
Just after Covid arrived in North America, journalist Helen Epstein was diagnosed with endometrial cancer — one of a predicted 66,570 new cases of cancer of the uterine body in the United States in 2021.
Two years ago, when the pandemic hit Boston, Arts Fuse reviewer Helen Epstein canceled her routine medical check-ups – eye, dental, and a twice-postponed pelvic ultrasound. Like millions of people across the globe, she weighed the risks of contracting Covid and decided against a routine medical visit. Two months later, she was told she had cancer. Below is a short section from her recently published book about her experience — Getting Through It: My Year of Cancer During Covid.
June 11, 2020
Dr. Wosu delivered the diagnosis over the telephone: endometrial cancer – cancer of the lining of the uterus, the most common of gynecological cancers. The others are cervical, ovarian, vulval and vaginal. GYN cancer is not as prevalent as breast cancer and not quite as terrifying as brain or lung or pancreatic cancer, but cancer all the same. She recommended surgery as soon as possible.
“Are you sure?” I asked.
“Sure,” she replied.
I would need surgery and, possibly, chemotherapy and radiation. She asked if I would like her to set up an appointment with AnneKathryn Goodman at Massachusetts General Hospital in Boston and I said, “Yes, please.”
Patrick [Helen’s husband] and I didn’t even think about a second opinion. MGH was a world-class hospital. As it happened, possibly because so many patients were canceling appointments because of Covid, Dr. AnneKathryn Goodman had an opening the following day.
But I struggled to keep a sense of control over my life. Many people blame themselves for enabling cancer. I had insisted on pursuing hormone replacement therapy, despite conflicting research studies and the disapproval of some friends. I had been using the low-dose estrogen patch for 15 years because it so significantly improved my sleep, my waning libido, and my overall sense of wellbeing. Was this cancer my fault?
I thought about my casual attitude towards my colds and cuts and bruises that seemed to take longer than usual to heal. Patrick would have called his doctor about each one. I didn’t. A year earlier, when a patch of skin on the top of my foot refused to heal many months after a deep scratch, I finally called the dermatologist. She diagnosed skin cancer and operated. But the experience did not pierce my shield-like belief that other people got cancer – not me.
Over the years, I had developed a kind of cancer hubris. In high school, one of my best friends had a malignant tumor in her knee and her leg was amputated. That was in the 1960s, when cancer was considered a death sentence. I was asked by her parents and our school administrators to help her recover, and I did both in the immediate aftermath of surgery and during the five years that we waited for a possible recurrence.. My friend had had no recurrence. That year, however, older people I knew died of cancer, including my beloved godmother.
Back then, few people went public with their disease – as though contracting cancer were shameful or a failure on their part. In the 1970s, when I became a journalism professor, I discovered in the privacy of office hours that some of my students and/or their parents had it: testicular cancer, brain cancer. As an arts journalist reporting for the New York Times, I found that celebrities kept their diagnoses even quieter. In 1987, theatrical producer Joseph Papp worried about being written off and/or losing funding for his theater if he disclosed his diagnosis, at 66, of prostate cancer. As the head of a major New York cultural institution, he was so concerned about being spotted at Manhattan’s Sloan-Kettering Hospital that he commuted to Boston’s Dana-Farber where we found him a specialist. He was treated there until he died in 1991.
Things had changed since then. One of my brothers, like so many other men I knew, had been tracking his rising PSA (prostate specific antigen) for several years before undergoing treatment for prostate cancer. My husband had his PSA tested as part of his annual physical. Because of these routine tests for prostate and breast and colon cancers, cancer mortality rates had been decreasing since the 1990s. The incidence of cancer, however, was on the rise worldwide. Millions of people, whether they viewed themselves as cancer survivors or disliked the term, now lived with a consciousness of cancer.
Compared to Covid in 2020, the disease seemed familiar if not manageable to me. The American Cancer Society was predicting 66,570 new cases of cancer of the uterine body in the United States for 2021 and 12,940 deaths. The average age of women when diagnosed was 60. More than 600,000 survivors of the illness are currently living in the U.S. That reassured my husband, a numbers guy. It didn’t particularly reassure me but I was still zoned out of any feeling and needing to hear or read the accounts of other women. I also needed to talk through my news with my closest friends.
June 12, 2020
On the day I first met my surgeon, only unaccompanied patients were allowed entry into Massachusetts General Hospital. It would remain that way through my year of treatment. Parents, partners and significant others were instructed to drive to the roof of a nearby garage, where, we were told, there was fairly good reception that enabled virtual participation in medical consults. We both maintained stoic fronts: a good-bye kiss and Patrick deposited me at Admissions.
MMGH is normally packed, but thousands of patients with heart problems, orthopedic problems, respiratory problems, diabetes, people with routine procedures scheduled as well as people who had been in accidents, were avoiding the hospital. Everyone was terrified of contracting the then-new virus.
I was scared too. For weeks I had been home with my husband; now, I was acutely aware of sharing breathing space with strangers. I waited in the lobby until I could catch one of the elevators to the ninth floor alone.
I texted Patrick photos and descriptions of the machines and my surroundings as I went through the preliminaries. The comprehensive check-in: body temperature, blood pressure, oximeter for oxygen level, weight and height. The blood draw. The chest X-Ray. The EKG. The CT scan. The stress test. Each involved people putting their hands on my body, and leaning their faces within inches of mine. We were all masked, and many of the nurses and technicians were also wearing gloves and face shields. I told myself that these precautions provided an extra layer of protection for and from them, but they also signaled danger and made me feel an anxiety that I was not yet in touch with about cancer.
After two hours of testing, I met my surgeon, Dr. AnneKathryn Goodman. While some patients don’t have strong feelings about the gender of their doctor, I do. I was pleased and relieved that Dr. Goodman was part of my demographic: From what I could see behind her large mask and plastic visor, she didn’t look anything like the traditional male surgeon in a white lab coat. Skinny as a teenager, her hair a mop of dark curls, AK, as her patients and staff called her, wore blue scrubs and pointy-toed Texan cowboy boots – even in the operating room, her nurses said.
I glimpsed tattoos beneath her sleeves and was glad Patrick could hear her clear voice but not see her. His French idea of a medical specialist was a well-dressed older man behind a fine desk on a Persian carpet. But Patrick was aware that, despite an informality that would have been inconceivable a generation earlier even in the United States, AK had an impeccable resume for an oncological surgeon.
We had looked her up, as we would look up every specialist and every procedure, online. Her bio included: Co-Director of Women’s Global Health at Mass General and Director of the Strength and Serenity Global Initiative to End Gender-Based Violence. Several of my Boston friends who worked in human rights knew her professionally. Her idea of vacation, one of her nurses told me, was flying across the world pro bono to treat women in refugee camps.
AK had looked me up too. She knew that I was a journalist and seemed comfortable when I took out a pen and notebook. Throughout my treatment, I interviewed everyone I met – receptionists, technicians, doctors and nurses, other patients. In my private life, I have known few doctors and was intrigued by the unfamiliar medical universe I had entered. I wrote down the information I was given as well as descriptions of anything that struck me as interesting. It was a long-held journalistic habit. But I soon became aware that it was also a psychological strategy that moved the focus of my attention away from myself and gave me some degree of agency.
After a few minutes of one-on-one, I phoned my husband, parked on the roof of the hospital garage. He would listen in over speakerphone. I had never been as aware of needing a second pair of ears as I was that day. To keep tabs on what was said, to evaluate how the doctor responded to me, to ask the questions that I was too overwhelmed or frightened to ask.
Instead of addressing my biopsy, AK began by asking me what I thought the best therapy might be for Yazidi women in the Middle East who had been raped. She had read online that I had written a couple of books about trauma and recovery. That threw me off and I imagined Patrick on the roof thinking, Why is she wasting time talking about Yazidis instead of Helen’s cancer? I wondered too. To give her a sense of how I thought? To give me a sense of proportion? Some semblance of agency? For her own research? But as I jotted this down, confessing that I knew next to nothing about Yazidi women, I gave her a few bibliographical references about mass psychic trauma, community and cultural interventions.
A doctor friend would later point out that many surgeons are known for ignoring the person in the room and focusing on the problem. By asking me for my opinion about a subject of interest to both of us, AK was signaling that she saw all of me – not just the part of my body on which she would operate.
After listening to my answer, AK took a meticulously detailed medical history. Maybe she always took her time with new patients, maybe all cancer patients were treated this way in this world-class hospital, maybe it was just a slow day, but I was surprised, and pleasantly reminded of unhurried medical appointments of my childhood, when doctors used to search out data from your face and body instead of from the computer screen.
After my new doctor had my full gynecological history – sexually active since the age of 20 – over 50 years of sex, I realized incredulously as I counted out the years – five pregnancies, two miscarriages, one abortion, two live deliveries, four fibroids, menopause, and 15 years of hormonal replacement therapy. Not atypical, I thought for a woman of my Boomer generation.
“Did HRT cause the cancer?” I asked.
“Unlikely,” AK said through her mask and visor. “We can never say 100% but we think it’s the grade 1 cancers that are driven by estrogen – not grade 3 like yours.” Many women she saw thought that they somehow brought their cancer on themselves, she added. That was a way of maintaining control, but not true. What was true was that the number of endometrial cancer cases had doubled in the last 20 years, probably because of environmental factors.
There were two key variables pertinent to gynecological cancers, she continued: Grade and Stage. I had previousy missed the information that my cancer was Grade 3.
Stage referred to the phase to which my cancer had progressed, and that information could only be gleaned from surgery. In the case of endometrial cancer, Stage One referred to cancer contained within the body of the uterus. Stage Two referred to cancer that had spread to the cervix. Stage Three meant it had spread to the ovaries and/or adjacent lymph nodes. Stage Four meant it had spread out of the reproductive organs and to other nearby organs, such as the bladder and bowel. Or that it had spread or metastasized via the blood stream or lymphatic system to more distant organs such as the lungs and liver.
Grade, on the other hand, referred to the three classifications of endometrial cancer cells or, as she thought of them, their three possible “personalities.” My biopsy showed my tumor as Grade 3, the highest risk category. Its name was “serous” [sic] and it was the most dangerous. It behaved like ovarian cancer and was treated as such.
That scared me. The comedienne Gilda Radner had died of ovarian cancer in 1989. Unlike the many women I knew who had had breast cancer, received treatment and went back to living their lives, those with ovarian cancer had died.
I asked no questions. There was silence from the garage where Patrick, too, was taking notes an. My surgery would be performed laparoscopically, AK continued, using tiny robots. That meant she would be able to operate inside my abdomen and pelvis without making a large incision in the skin. This procedure, also known as keyhole surgery, would perform two functions: therapeutic (it would remove the cancer) and prognostic (it would identify the stage). I would be given general anesthesia and a breathing tube would be inserted to control my breathing during the procedure. Instead of making one long incision, AK would make five small ones in my abdomen. Using small robotic arms and mirrors, and a tiny camera placed in my abdomen, she would cut out my entire uterus and its associated fibroids, fallopian tubes, ovaries, lymph nodes.
This entire “package” would be “delivered” through my vagina. Then the top of the vagina would be folded over, and stitched up like the hem of a dress. The operation would take three to four hours, with an additional three hours recovery time. Unless there were complications, I would go home the same day. Recovery from laparoscopic surgery was typically not painful, AK said, and would most probably not require prescription painkillers once I left the hospital. Just over-the-counter meds. And no heavy lifting for six weeks, as well as no sex, no baths, and no swimming. I wrote it all down.
AK searched what she could see of my face behind my mask and when she thought I was ready, continued. All the material she removed from my abdomen would be analyzed to confirm Grade and Stage. After she read the pathology report, we would have a discussion. Sometimes surgery was all the treatment required. Sometimes more. Chemotherapy was a probability. So was radiation.
It was good that I kept writing because my mind had stopped tracking. It seemed like an awful lot of stuff to take out of my body. Would I feel hollow afterwards? Would my intestines sink to the floor of my pelvis with nothing to hold them in place?
Will I feel empty? I asked AK out loud.
“Nah,” she replied. “Think of it as a sock drawer. Uterus, fallopian tubes, ovaries, lymph nodes, cervix – they’re all mashed up against your intestines like socks in a drawer. Take out four or five pairs and you don’t notice anything missing, do you?”
No, I thought, trying to visualize the inside of what I thought of as my stomach as a sock drawer. But the drawer does look roomier.
Then she asked, “How do you feel about your appendix?”
I started laughing under my mask. I didn’t feel one way or other about my appendix, I told her. But my younger brother had recently undergone a scary emergency appendectomy, so I wasn’t surprised to hear myself say, “I wouldn’t mind if you took it out too.”
“Okay,” said AK. Her assistant would be in touch with my surgery date. During these next two weeks I should settle any outstanding professional issues, keep up with my exercise, make sure to sleep and eat well. I needed to be in good shape for the operation. And it would be wise to think about how and where I would recuperate from surgery.
Now it was Patrick’s turn to ask his questions. He had a tendency to cross-examine doctors and make outrageous demands. I had been mortified a year earlier when he requested that my cataract surgeon walk a straight line just before I was to be wheeled into the OR. Without taking offense at my husband’s suspicion that he might be drunk and understanding his anxiety, the surgeon had complied. Now, exiled in the garage, Patrick was not out of bounds in his interrogation of AK. By the time we were back home it was all settled.
We are an international family with members and friends on different continents. We didn’t want to have a series of conversations about my situation so we put together a group email list and I wrote the first of what would be a series of bulletins to what became over two hundred people. I certainly felt none of the shame that had once hung over cancer patients. I could sense my journalistic skills kick in as I described the new world I had entered. I sensed that writing periodic bulletins would help both Patrick and me get through a year of treatment and recovery.
Jun 12, 2020, 5:28 PM
Please forgive the group email. For those of you that I did not manage to alert by phone, I am sorry to let you know that I have endometrial cancer. My surgeon is AnneKathryn Goodman at Mass General Hospital. This being Boston, she has been vouched for by three of my friends. I am in great hands.
My surgery is scheduled for June 25, assuming that I pass a heart stress test.
After a biopsy of “the package,” I will learn how far the cancer has spread.
Friends, some of whom had no idea of how to help, had urged me to be explicit about my needs so I wrote,
Some of you have asked how you can help. Please hold your questions. Please send recommendations of your favorite movies and mini-series. Please bake or cook something. On sunny days, come visit me outside.
Our family (two sons; one daughter-in-law; two brothers; three sisters-in-law, one brother-in-law, seven nieces and nephews) and most of our friends complied with my requests and held most of their questions.
Author Helen Epstein (helenepstein.com) underwent surgery, chemo, and radiation at Massachusetts General Hospital in 2020. She is now cancer-free.