I don’t talk about my experience with breast cancer. I write poems about it, but I don’t read them in public. I’m a pretty private person who edits what I post on social media. But recently, as more women – mostly health care providers – ask questions, I’ve come to believe that being vocal about my experience might help other women. Making it public (as public as I ever care to be) might take away some of the stigma and fear. If there’s a chance that sharing my experience might help another woman, then I’m ready to talk about it.
When I was 12 years old, my Aunt Sissy (Sarah Josephine Riviere, my dad’s sister) died from breast cancer that had spread. She was 49-years-old. Aunt Sissy was like a second mother to me. I lived with her and her mother (“Nan” to me) for long stretches of time during the years when my dad was starting a new printing business and my mother was frequently hospitalized.
Aunt Sissy was the only adult who treated me like I had sense. She was honest and candid. She talked with me about the hard subjects that the other adults in my family wanted to hide – my dad’s alcoholism, my mother’s depression, her own breast cancer and prognosis. While the other adults dished out platitudes (“When Sissy gets well,” “We don’t know what’s going to happen.”) Aunt Sissy told me that she was dying. We talked about her life, her loves, the man who sent her roses during her last weeks at home; her former husband who gambled away all the money they had saved to buy a house. We talked about her dreams and regrets.
Aunt Sissy had been afraid to go to the doctor when she first found a lump in her breast. She tried to wish it away the way she had “wished away” the wart on my finger. For all her honesty and candor, Aunt Sissy was wonderfully human, as flawed and marvelous as any of us. Her experience has stayed with me and made me more sensitive to any changes in my body. Always, in the recesses of my consciousness was the possibility that I too could develop breast cancer. And I did not want to wait until it was too late to save my life.
A lot has changed since the 1960s when Aunt Sissy was diagnosed. The publicity campaigns urging women to conduct regular breast exams, recommendations for annual mammograms, advances in science and medicine have all helped bring breast cancer into the public discussion. Women share their experiences on social media; celebrities talk about their breast cancer experience. And yet…
The questions beneath the very public awareness campaign and discussions that I keep hearing are these: What’s it really like? How did you discover your cancer? How did you know? How did you go about making the decisions that you made? Were you afraid? How did you handle your fear? How are you now? Really – how are you? Are you afraid the cancer will come back? How did it change you?
According to the American Cancer Society, 1 in 8 women will develop breast cancer. That also means that 7 out of 8 women will not develop breast cancer. I was diagnosed in 2010 at age 61, a pretty common age for the diagnosis. I had spent years being called back for a second mammogram and ultrasounds because of my dense breasts. Still, the diagnosis came as a shock. I was healthy, a runner with several big races already scheduled for the year. I ate a healthy diet. I lived a good, balanced life with friends and family. I was working on a new book. When I went for my annual physical in January, I was still a week away from my annual mammogram appointment. My doctor found a lump he said felt different from the usual dense tissue. He referred me to a breast specialist/surgeon and ordered a diagnostic mammogram. I was terrified. Mostly, I was afraid of the unknown. I’ve long said that I can deal with anything as long as I know what I’m dealing with. At that point, I had no idea what I was dealing with.
I was fortunate that the breast specialist/surgeon was a woman I had an immediate rapport with. She had trouble locating the lump and when she did, she suggested a needle biopsy while I was there. I eagerly agreed. As I left, she said that she didn’t think it was anything to worry about. I left her office relieved, almost giddy. That afternoon, I had an appointment for a mammogram and ultrasound that I anticipated would be routine. I was shocked when the ultrasound found “several troubling areas” and the doctor recommended I make an appointment for a biopsy the next week. I had spent the entire day in an emotional Cuisinart, and there was no way that I was going to wait another 4-5 days for a biopsy.
My new doctor agreed, and I filled out insurance forms, had the biopsy, and went off to yoga class with ice packs in my bra. My two running partners got me through that class. They, and a few other girlfriends, were my lifeline. I don’t know what I would have done without their support, our continued runs together, and talks. My husband, an RN, was my rock. He listened. He offered unconditional support and reassurance. He told me when I needed to find new words to express my anger, frustration, and fear.
While I waited for the biopsy results I continued my daily routine and made plans to keep commitments that I had for events. I ran. I prepared for a reading and talk to a writers’ club. When I was tired of waiting, I called my doctor. “I’m sorry to say…” she said and my life changed. “This is small. We can take care of it,” she tried to reassure me. I wanted her to tell me right that minute just what we were going to do and when. But she told me to make an appointment for the next day and bring my questions. The lump discovered by my primary care doctor was benign, but lurking behind my left nipple was a small malignant tumor. It would have been missed by a routine mammogram.
When I got off the phone I went downstairs where a group of men were wrangling new granite countertops for our kitchen renovation. I admired their work and thanked them. It felt surreal. Would I even be around to enjoy a new kitchen? When the men left, I opened a bottle of good wine and poured a glass into my mother’s good crystal. I sent a text to my husband, who was on the second day of a new job. I called my friend, Louise, who had invited me to speak to her writers’ club that week. She became one of my angels. She said there was a bad ice storm predicted for the day of my visit and we should postpone the reading and discussion. I didn’t want to tell anyone about my diagnosis. I wanted to tell everyone and scream. I read as much as I could from trusted online sites, primarily the American Cancer Society, Mayo Clinic, Johns Hopkins before my appointment with my surgeon.
The first thing the surgeon did was ask me what questions I had. I realized afterwards that was a way for her to gauge my comfort level and assess what information I wanted and how I wanted it presented. After I asked my list of questions, she replied: “You want to know everything and you want to know it now. I can’t give you all the answers now, but I’ll give you the pathology and we can talk about your options and next steps.”
That began a six week process of more tests, scans, at my request, to see if there was cancer anywhere else in my body. Something (cancer) was trying to kill me and I wanted to get rid of it and give myself the best chance of a long and happy life.
My surgeon first offered me the option of a lumpectomy or mastectomy. For me the choice was easy. With a lumpectomy I would likely need radiation and maybe chemotherapy. I wanted the least invasive treatment and that was a mastectomy. By the time we had all the test results, there were more questions than answers, and a chance that more cancer would be found in both breasts. I chose a bilateral mastectomy.
My husband insisted that I tell my family and he sat beside me while I made the dreaded phone calls. I didn’t have answers to their questions. I didn’t have answers to my questions. I had initially decided that I did not want to tell anyone. I would have the surgery, have reconstruction surgery and go about my business as usual – with new, perky breasts. But a friend sent an email to many of my poet friends and I started receiving calls, cards, and messages of support. I found it all a bit overwhelming and I’m afraid I was not good at responding or thanking my friends for their support. That’s the one thing I regret. Even a frightening diagnosis is no reason to ignore friends.
At some point during this experience I realized that I was going to be okay whatever happened. Call it faith. Call it letting go. Call it acceptance. I call it all of those things. I had no assurances of what my life would be like or how long that life might last. One day, before my surgery, my two running partners took me to lunch and we shopped afterwards at an outdoor equipment and clothing store. Without thinking about it, I happily bought sale items that I likely could not use until the next year. The next year. I was planning for a future.
I was lucky. There was only the one, small, known malignant tumor, no cancer in my lymph nodes. I did not need chemo or radiation. I took a hormone blocker for five years and have been cancer free for the last 12 years. My oncologist told me on my first visit that she saw no reason I could not live to be 90 years old. Just 90? I joked.
Although I had plans to have reconstruction surgery, I was surprised to find that as I began to heal I began liking my flat chest. I appreciated the clean lines, the scars that reminded me every day that I am alive. I liked the way I felt when I ran. I liked the freedom I felt gardening. I delighted in the fact that bare-chested is not the same as bare-breasted. Mostly, I liked being free of cancer.
Still, I chose to have reconstruction, mostly because I wanted something pretty from this ugly disease. I was fortunate that my plastic surgeon was as much artist as she was a skilled surgeon. Thanks to the efforts of former Sen. Barbara Mikulski of Maryland, insurance companies that cover mastectomies must also cover breast reconstruction surgery.
I don’t define myself as a breast cancer survivor. Neither the disease nor my survival defines who I am. I am not brave. I didn’t fight anything. I just kept living my life the best way I knew how. I like to think that I have enough sense to know my luck. Do I worry that the cancer will return? Sure. Worry is a genetic trait in my family. But I try to heed the advice of a friend who wisely advised: worry is interest paid on trouble yet to happen.
My experience was uniquely mine. I made choices that I felt were in the best interest of my life and continued good health. I would make the same choices again. I didn’t learn any grand “life lessons” and I do not romanticize this nasty disease. I do hope that the experience gave me a new empathy, a better appreciation for each day and awareness of how life can change in an instant. Every woman diagnosed with breast cancer will have her own unique experience. But you are not alone. Sharing our stories is a way of validation, a way of saying this bad thing happened and I lived to tell about it. If I can do it, so can you
WHAT TO DO
It’s not that I don’t appreciate
the thought, the need to do some-
thing, show support for what you imagine
I must be going through. How could you
know? I was once like you, wanting
and not knowing what to say when
the Big C diagnosis landed on a friend.
Those prayerfully knitted shawls, crocheted
pink ribbons, all meant to comfort, remain
reminders of the disease no one wants.
But if I die – and it’s not likely any time soon −
I will not be draped in a pink shroud. Please,
spare me the angel pins and platitudes. Don’t ask
what having cancer has taught me
or say, you have cancer,
cancer doesn’t have you. Look at me
as if you believe I will live forever
or at least as long as your own precious lifespan.
Don’t tell me this is God’s way
of getting your attention or worse,
God’s will. Bad things happen.
I do the best I can as I have always done.
I still rise every morning on strong legs,
run five miles through the woods.
So, come, let’s eat Belgian chocolates,
sip French champagne, and shop
for a new t-shirt and running shorts.
—Pat Riviere-Seel, When There Were Horses (Main Street Rag, 2021)