Author who dealt with cancer during covid offers some advice

'Life goes on while you have cancer and presents many opportunities to reflect, smile and even laugh,’ Helen Epstein explains in a Q&A

(Laura Epstein/iStock/The Washington Post illustration)
Comment

When the pandemic exploded in the United States in spring 2020, Helen Epstein canceled all her medical screening checkups — eye, dental, gynecological. Like many other Americans, the 72-year-old didn’t want to enter a large medical facility for any reason. She also canceled a routine ultrasound that her doctor had been ordering every few years to check on her fibroids and uterine lining.

And then one day, the longtime journalist noticed a streak of blood in her underwear and knew enough to call her gynecologist. She rescheduled the ultrasound for the next day.

When the ultrasound came back problematic, her doctor scheduled a biopsy, which found endometrial cancer. Perhaps because of pandemic cancellations, Epstein managed to get an appointment the following day with a top-flight surgeon. In “Getting Through It: My Year of Cancer During Covid,” she details her travels through a covid-era medical landscape and offers a personal guide to others making their way through the cancer tunnel. Below are some of the questions many patients have and Epstein’s answers.

Covid and cancer: A dangerous combination, especially for people of color

Q: Millions of people all over the world canceled routine cancer screenings — Pap smears, mammograms, colonoscopies, lung scans — like you did. Yet you knew to call your doctor right away when you saw that blood.

A: Unlike breast cancer, which can be detected by touch or visible changes, gynecological cancer — which includes ovarian, uterine and cervical — is usually “silent” or hard to identify. But a streak of blood postmenopause was clearly visible and a symptom I had been warned about for years. That May two years ago, I weighed the odds and decided that catching covid-19 was less scary than letting my cancer grow. I wanted it out of me. With so many people canceling, all my tests, procedures and appointments were fast-tracked. Just over a month elapsed between my noticing the streak and surgery.

Q: You write about the enormous changes in gynecological cancer in the past decade. How did you experience it?

A: I live in Boston, and am lucky in that my doctors are affiliated with Massachusetts General Hospital — one of the best medical centers in the world. The first thing I noticed was the enormous change in the demographics of medical care. Almost all of my medical team were women — everyone from tech to surgeon. My surgeon, AnneKathryn Goodman, did not wear a white lab coat and she was not addressed as “doctor” — everyone called her AK and she operated in cowboy boots. The second thing I noticed was how multicultural the staff was. My diagnosing doctor Uchechi Wosu is of Nigerian descent, and her nurse was Haitian. I am White and come from an immigrant family. Over the course of my treatment, I observed how much gender and a range of cultural backgrounds contributed to my comfort. During my treatment, I interacted with medical professionals from all over the world. They were an extraordinary source of information and insight to me as well as a distraction from the ugly tubes and machines of the examination rooms and infusion ward. For a long time during this pandemic, they were the only people I saw up close, and I got to trust and appreciate them.

Fewer patients of color have health-care providers who look like them

Q: How about changes in treatment?

A: Anyone who’s read Gilda Radner’s memoir about having ovarian cancer or seen the TV movie “Wit,” goes into chemotherapy and radiation terrified. In both those accounts, not only do the women die but the treatment causes unrelieved nausea, pain, frustration and exhaustion. Although I had endometrial cancer, AK told me that my type “behaved” like ovarian cancer. That scared me. But she explained that over the past two decades all parts of treatment — surgery, chemo, radiation and medication — had vastly improved. In fact, my experience was nothing like Radner’s or the English professor’s of “Wit.” Chemo was difficult, but it was nothing like the torture described in those accounts. Newer surgical techniques such as laparoscopy allow for very small incisions, minimal scarring and quick recovery time. Newer chemo regimens are shorter than they were and more tolerable because of researchers’ “tweaking” of medications.

Q: How important is it to have a partner to go through treatment with you?

A: Essential. Though significant others were not allowed to accompany patients at the time and I made my way through the hospital maze alone, my husband, Patrick, participated virtually in every consult. Cancer treatment is way too overwhelming to absorb alone. It’s physically, mentally and emotionally exhausting and you need a backup. Even figuring out your pills can be daunting. My treatment partner was my spouse, but I know people who feel that their life partners, for various reasons, would not be right for this voyage and turn to a good friend, a family member, or even in one case I heard about a housekeeper. My husband, a numbers guys who loved charts, turned out to be an excellent medical partner: calm, competent and reliable. He was able to be my trustworthy backup at medical consults and my caretaker at home — he did the medical calendar, the pill schedule, made sure I was drinking enough fluids, got me to walk every day. It’s an incredibly difficult job. I think cancer is sometimes harder on the caretaker than the patient.

Caregivers of elderly loved ones face heavy emotional, physical, financial toll

Q: Many people still keep their cancer a secret. But you told almost everyone you knew.

A: I didn’t see any reason to keep my cancer a secret and many reasons to tell people. Cancer — perhaps GYN cancer in particular — was once associated with shame. It was also considered a death sentence. Some people — especially public figures such as the late theater producer Joseph Papp, whose biography I later wrote, worry that if people find out, it will affect their professional life in a negative way. He hid it so well that when he died of prostate cancer, people were as surprised and shocked as they were by the deaths of actor Chadwick Boseman, who died of colon cancer at 43, or writer Nora Ephron, who had acute myeloid leukemia.

Chadwick Boseman’s death is making young people think about colon cancer. Here’s what to know.

I had a couple of reasons for making it public. I have close family and friends who unfortunately are scattered over the world: the only way to avoid repeated conversations was to tell them all at the same time by email. Also my French husband didn’t know how to navigate a supermarket or cook. We don’t belong to a synagogue or church so I could not rely on that great source of support. But we needed help and I was candid in emailing people what we needed: good food, good entertainment recommendations, no questions, no advice. Many people asked for updates during my year of treatment and recovery, so Patrick created an email list that came to include not only family and friends but my high school Listserv — a great source of inspiration and information. I attended an all-girls high school and many of my former classmates had already been through cancer. They were very helpful. At first, Patrick wrote the updates. Then I took over. The responses to those updates were invaluable to my sense of connection to other people — particularly during the isolation of covid.

Q: What happened to your friendships during cancer?

A: I was a Brownie Scout who sang “Make New Friends (But Keep the Old)” and my friendships have survived marriages and divorces, distance, political differences and addiction. I had rarely given a friend up easily — until cancer. Illness taught me a lot about being a friend. By the time chemo kicked in, I became too weak to talk for more than a few minutes at a time. For what seemed the first time in my life, I was forced to be completely passive and quiet. I had no energy to put into a friendship, no slack to cut anyone, no resources to humor or console or excuse. Instead of talking, I listened.

The friendship checkup: How to reevaluate relationships and take steps to repair them

My friends surprised me — in both pleasant and unpleasant ways. Family members actually became closer to me than they had been before I was ill. Old classmates with whom I hadn’t been close were so funny and helpful that I wondered why we hadn’t been besties back then. Most of my friends came through and I was especially amazed by the support of those who had children with special needs. But I also discovered “cancer ghosting” — friends who disappeared when they heard I had cancer. And friends who could not adapt to me as a patient. Luckily they were in the minority.

Q: What’s your best piece of advice for someone just entering the cancer tunnel?

A: Try to figure out what you need. Then organize it. Be clear about what you want — and don’t want. Every person is different: young, old, single, partnered, with different needs and different cultural sensibilities. Some have been watching hospital TV shows forever and find the medical setting familiar. Others find it alien. Non-English speakers here can find it super-alien. Some people going through this embrace the “war-on-cancer” language while others hate to be termed “survivors.” Some idealize their doctors and follow their instructions without question. Others question many things their doctor recommends and some, of course, refuse treatment.

The important thing for me was to be aware of and remain in touch with my needs and set up a medical team I could trust. Beyond that, I needed a nurturing recovery environment — I was lucky it was warm and I could be outside in nature. I used my laptop and iPhone — to stay in touch with family and friends and to distract and entertain myself. During chemo infusions, I must have watched the movie of “Hamilton” at least five times. I also watched several TV miniseries — “The Queen’s Gambit” and “Last Tango in Halifax” — and National Geographic documentaries. I found personalized internet access a vast improvement over the TV sets still found in hospital rooms. I needed to zone out of those rooms; other people need to zone in and immerse themselves in every detail of their treatment.

But it was useful for me and, I think, for all of us, to remember that we are among millions of Americans getting through cancer treatment these days. Life goes on while you have cancer and presents many opportunities to reflect, smile and even laugh.

Helen Epstein is the author or co-author of 10 books of nonfiction.

Loading...
Loading...