Right now, there are moms all over the country squeezing in homework help and signing school trip permission slips between rounds of invasive cancer treatments. It’s not a trend anyone wants to be a part of, but for so many, this is their reality.

By Sarina Finkelstein
January 09, 2020
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Ashlea Betzen-Miyauchi and Sarina Finkelstein-Leventi on October 19, 2019. Ashlea had just been admitted back into the hospital for complications related to metastatic breast cancer.
Courtesy of Sarina Finkelstein

My best friend, Ashlea Betzen-Miyauchi, is in a hospital in Missouri for complications related to metastatic breast cancer that spread to her bone marrow. She is 39 and in a hospital bed instead of at home with her two children. This shouldn’t be her reality, but it is.

“First we had the ‘Tiger Mom,’ then we had the ‘Helicopter Parent,’ then the ‘Hipster Dad,’ and now we have me, the ‘Hospital Bed Mom,” Ashlea told me in October, with her own dark humor. “The face of parenting in this country has changed, and we are not equipped for it. We are not equipped for busy parents who have to schedule play dates from a hospital bed, and who still try to log work hours in between chemotherapy treatments to keep their insurance coverage.”

At age 36, Ashlea became one of the four percent of women diagnosed with breast cancer in the United States who is under the age of 40. With no family history of the disease, her young age may sound surprising, but it shouldn’t. Though the healthcare industry only advises breast cancer screening begin after age 40, the rate of new diagnoses in younger women is increasing and most women who develop breast cancer do not have a family history. “Women who have had a full-term pregnancy have an increased risk of breast cancers that peaks at five years after childbirth,” says Carol DeSantis, MPH, a cancer epidemiologist and principal scientist of surveillance research for the American Cancer Society (ACS). And scientists studying those women diagnosed with breast cancer under the age of 40 found that they have a poorer prognosis, higher proportions of late-stage cancer, and higher mortality than older women diagnosed. As of the time I write this, DeSantis says that they “estimate that 11,870 women under the age of 40 were diagnosed in 2019.”

While navigating a cancer diagnosis is difficult for anyone, when a woman under 40 gets the diagnosis it’s particularly trying because she’s at the life stage when she’s considering pregnancy, already pregnant, or raising a young family. These women now have to consider how treatment would affect their fertility or impact their ability to act as a caregiver to their families.

The Struggle for Early Detection

In 2016, at age 36, Ashlea was diagnosed with Stage IV estrogen-receptor-positive breast cancer after she found a lump in her right breast during a self-exam. She called her doctor and got a mammogram, which led her to get a single mastectomy and removal of some of her lymph nodes to which cancer had already spread. She underwent rounds of chemo. She even had a preventative hysterectomy. And she did it all while raising twin boys, then 10 years old. Ashlea is her sons' primary parent but has help from her parents since her diagnosis.

Ashlea entered remission that same year and returned to being the vibrant and active person she had always been. In the summer of 2019, she was thrilled to have secured a permanent teaching job at Missouri State University. But just a few months later, on September 13, Ashlea posted on Facebook with her usual quick and easy wit: “So the cancer is back. Bad news is it's not curable. Good news is I still have a fighting chance of outliving Ruth Bader Ginsburg [RBG].”

From her hospital bed, Ashlea insisted that her sisters get mammograms, but they are 30 and 27 and individual and group health plans are only required to cover breast screening and prevention services to women starting at age 40. According to DeSantis, there's a reason younger women don't get screened: “Breast cancer screening is not recommended for average-risk women before age 40 because the risk of breast cancer is low in this age group and mammography screening is also less effective,” she says. Instead, doctors suggest women familiarize themselves with their own breast shape and size in order to pick up on any changes.

“Women should see their OB-GYN every year for a formal breast exam but the women themselves are the most likely people to pick up that they have breast cancer,” says Karen Duncan, M.D., assistant professor and residency program director of the Department of Obstetrics and Gynecology for New York University Grossman School of Medicine. Dr. Duncan says that if you do come across abnormalities, like lumps, bumps, redness, or nipple discharge, make an appointment with your doctor who may recommend further screenings.

Ashlea Betzen-Miyauchi with her boys, Kay and Sho, at the third annual Reach for the Stars 5K race for Shining Stars Early Childhood Center in Springfield, Missouri, October 6, 2018.
Courtesy of Ted Betzen

No Such Thing as Normal

In the sleepless nights after visiting hours when Ashlea lays awake in her hospital room, she writes a blog to keep friends and family informed about her condition. In one of her first entries, she decries the new diet the doctors have put her on. She longs for fresh blueberries and the honey from her father’s home apiary. She texts me in frustration that she was unable to watch the second season premiere of The CW’s reboot of her favorite show, Charmed, on the hospital TV. It’s simple things she misses, but she just wants normal.

It’s hard to picture my sassy and vibrant friend confined to a hospital bed. I have known Ashlea since we were 13 years old when we met as roommates during the Summerscape gifted education program at Drury University. We now live 1,200 miles from one another—Ashlea in Missouri and me in New York, but all it took was reading one entry of her blog for me to dump 86,000 credit card points on an airline ticket to fly out to see her with an RBG action figure in tow to sit on her windowsill. RBG refused to accept the reality around her as it was. So, too, I hoped, would Ashlea.

While I’m visiting Ashlea at the hospital, she responds to texts from fellow parents of her sons’ Scout troop members as they go on a weekend road trip. She's den leader and was supposed to supervise the trip, but coordinated so her father could go in her place. Mixed in with texts from friends asking for updates on her health and emails from her boss asking when she will be back at work, are group chat texts from those scout parents placing orders for french fries as the troop has pulled over at a rest area to grab lunch. Even though she is fighting for her life, she feels that she can’t let any of this drop.

The author, 12, and Ashlea Betzen-Miyauchi, 13, participating in the farewell daisy chain circle on the last day of Summerscape, Drury College, Springfield, MO.
Courtesy of Sarina Finkelstein

I ask Ashlea what she is most afraid of, and she says she fears for her boys. She struggles to figure out how to explain this new reality to them, to prepare them for what life could be like for them without her. She says she is prepared to fight for every last second with them, even if that is spent from a hospital bed. “I just have to find a way to be present and to keep track of things,” she says. “The school year started. I just don’t know any of their teachers. Did they get their homework done? I still see them as babies, but maybe I should give them more credit. Maybe they don’t need me as much as I think they do.”

The principal of their Catholic school brought Ashlea a fleece prayer blanket that her kids’ seventh-grade class made. In her blog entry that day, she wrote, “This blanket is more valuable to me than anyone understands because my boys do not talk to me about [my cancer]. They don’t know what to say.” The blanket lets her know that they have a community of support around them. She calls the blanket her “superhero cape” and it is now tucked around her on the hospital bed for them to see. When I visited, she confessed to me, “My greatest fear is that they never understand how loved they are and how every decision I made in my life was made for them. That they are the most important things in my life.”

The Fight to Get Moms Home—For Good

As I boarded my flight back to New York after spending a week in the hospital with Ashlea, I learned that her blood levels have come back up high enough for her to return home and continue with outpatient chemo. But her progress at home was short-lived and less than two weeks later, her blood levels dropped again.

On social media, she posts about being “back in the saddle” of her “old” hospital room. But on the phone with me, she confesses she doesn’t know when she’ll get to be back home with her kids again. She went in and out of the hospital’s revolving door two more times, then on Friday, November 22, as if in some strange cosmic coincidence, Ashlea and RBG were both admitted back into the hospital.

Ashlea Betzen-Miyauchi with her boys, Kay and Sho, at her sister Hillary's wedding in 2016.
Courtesy of The Betzens

The trickiest thing about cancer is that it mutates and grows silently. The treatments can cause side effects that mirror the symptoms of the disease, and the two become so intertwined that days are spent with medical professionals trying to tweeze them apart to determine the best course of treatment. There can be moments of security and safety which without warning give way to terror.

When Ashlea relapsed, her cancer came back so aggressively that each MRI was outdated by the following week and no surgery or treatment could work fast enough to suppress the growth of the new tumors that took over her body. My friend died on November 24, at the age of 39, in the arms of her parents. This was the same day RBG, 86, was released from the hospital. Knowing Ashlea, she would have seen both the irony and poetry of that coincidence and what it meant in the broader sense.

“Hospital Bed Mom” is a trend that we should be working to end, and that starts by recognizing that there should be no age limit on breast cancer screening and awareness. Forty is not a threshold.

If you are interested in learning more about my friend Ashlea Betzen-Miyauchi and her family, you can go to the GoFundMe that has been set up to raise money for her sons’ educational expenses.

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This article originally appeared on Parents.com