โŒ

Reading view

There are new articles available, click to refresh the page.

There's no room for being a mom when you have cancer

Rear view of mother and toddler walking in hospital corridor

Getty Images; BI

On a Monday in December 2022, I was driving to a consultation meeting with another psychotherapist. At the red light, I texted my friend a picture of festive leggings, "I think you need these."

I mentioned that I had an off-site meeting, then a callback mammogram at the hospital, and later, I would see therapy clients at the office. I wasn't too worried.

When I got to the hospital, the mammogram tech reassured me, "Oh, is this your first callback? Oh, gosh, don't panic. Women come here all the time. And you're so young." Then, she began to study the images. She wanted another angle. Another tech appeared in the room.

They decided I should see the doctor for an ultrasound "just to be safe."

I sighed and texted my friend, "My mammogram is taking forever. Now I have to reschedule two patients, and I won't make it to Dollar Tree."

Later, I looked back at this text exchange. I was so clueless. This was the beginning of my relationship with an inflexible system. I knew nothing about juggling work, parenting, and medical obstacles.

I never made it to the office

An hour later, I was on a table, my left arm hooked over my head. The radiologist poured warm, blue gel onto my breast, then pushed a little transponder over my skin. "This was a lot more fun when I was pregnant," I joked, and the radiologist smiled.

"What's the likelihood that I have cancer?" I asked. The radiologist paused for an extra moment, sized me up, and seemingly lied, "Oh, probably 50/50."

And then I knew.

The radiologist helped me roll to a seated position on the exam table. She left to put in the order for the biopsy. I curled over and felt bare as I wiped the gel off my chest. I started to cry.

The nurse asked me if I was OK. I told her my kids were so little; this couldn't be true. I was begging: "It's Christmas." I wanted an exception, as though I had missed the registration deadline for youth soccer teams.

A couple of hours later, I was back on another table for a biopsy, arm over my head in a now-familiar arc. My husband met me at the surgeon's office but wasn't allowed into the procedure room.

The surgeon said he wasn't sure, but they thought it was Stage 1 cancer.

Woman wearing mask at doctor's office
The author was diagnosed with cancer at age 39.

Courtesy of the author

I drove home while my husband picked up the kids from the neighbor's house because the playdate had already been extended too long. I stopped in the school parking lot down the street from my home and cried for 10 minutes.

My husband and kids drove by. They didn't see me, but I knew they would need me. It was dinnertime, so I went home. I had an ice pack strapped to my chest. That evening was the first of many times I had to angle sideways against my kids' flying arms and crashing hugs.

I was diagnosed at 39

The official diagnosis reports came two weeks before Christmas. My kids were just 7 and 11, and Santa can't exactly take sick time. Bruised from the biopsy, I cried every day at 2 a.m. During the day, I strapped ice packs to my chest and wrapped the gifts.

Friends dropped off blankets, ordered pizzas for my family, walked the dog, drove boxes to the post office, wrapped even more gifts, and picked up my prescriptions โ€” and the Christmas Eve appetizers from Trader Joe's.

For the next two weeks, I drove between my home, office, and the hospital, meeting with surgeons and genetic consultants. The decisions were endless: surgical decisions, treatment possibilities, and how to care for my family and patients.

Some of my therapy patients can handle multiple separation periods, but others need uninterrupted care. I consulted with fellow therapists, but there were so many unknowns: how many surgeries I would need, whether I would need chemotherapy and radiation treatments, and what my prognosis was with each step.

In the end, colleagues became the primary therapists for several of my patients, and I reduced my hours to part time, with intermittent leaves.

As I made these arrangements, different hospital departments would call to inform me of my next appointment with a new specialist. Breast cancer treatment requires a cardiologist, a surgical oncologist, a medical oncologist, a gynecologic oncologist, a neurologist, a psychiatrist, a hematologist, insurance care coordinators, and social workers.

No one seemed to understand that I already had a full schedule of patients, youth sports, childcare, and other commitments.

Once, I received a call at 11 a.m. for a hematology consult at 1 p.m. I protested; I had my own therapy patient scheduled at that time. I was told that next week's surgery could not proceed if I didn't show up. So, I abruptly canceled my afternoon patients. I felt so unprofessional, but it was out of my control.

I made so many phone calls; the worst part was calling family and friends with bad news.

"But you're so young," said my grandmother.

"But you're so young," said my neighbor.

"But you're still so young," said my older friends.

I am young among cancer patients, but I'm also part of a growing trend. A report from the American Cancer Society this year said that one in 17 women will develop some form of early-onset cancer before the age of 50. From 1990 to 2019, early-onset cancer rates increased by 79% globally, a study published in BMJ Oncology found. Despite rising rates, young women still represent a minority of cancer patients.

In other words, I look like a preteen in a cancer center waiting room. At the rehabilitation center, where I receive physical therapy for my chest and hips, I look out of place among the older patients. Many of them use walkers, have gray hair, or are balding. Their faces are slack with exhaustion. I wonder if I will look like them soon.

Beginning in January 2023, I had a lumpectomy, a double mastectomy with reconstruction, and a hysterectomy, all within nine months. My pectoral muscles are shredded, and my armpits are unnaturally tight from resectioned skin and lymphatic cording.

Sometimes, I joke, "Look at me! I'm a damaged marionette!" I use humor to cope, but sometimes, my friends worry about me.

On hard days, I am terrified of heavy doors and try to scuttle between other people. On my best days, I can run for miles and play basketball with the kids.

There's no childcare for cancer patients

Mothering through cancer is not for the weak. The medical world only recognizes "cancer" โ€” not the rest of our lives.

I had to arrange childcare for every appointment, biopsy, scan, and lab draw. I already felt overextended as a working mother. Cancer added another ball to juggle. These tests and procedures usually take place during regular business hours, so I had to make sure that my husband or a friend could get the kids to school, manage school pickup, or take them overnight when I was admitted to the hospital.

After my initial surgeries in early 2023, I needed to be at the cancer center for a half day every 28 days to get a drug that paused my ovaries and maintained menopause for my treatments. That's a big ask for a working mother.

After seven months of this schedule, I chose to have a total hysterectomy to cut out the appointments and lower my future cancer risk. I still go to the cancer center every three to six months, but at least it's not monthly. Without the surgery, I would have needed the injections for five to 10 years.

I called into consultation meetings for work by phone from my car, traveling to and from the hospital. I coordinated playdates in the waiting rooms. And I knew that I was lucky. My work could be flexible. My doctors took me seriously and found me relatable: I am white, highly educated, and upper-middle class โ€” just like them. If I disagreed, I felt empowered to ask questions. It was staggering to think, "Here I am, positioned with more privilege than anyone deserves, and yet, this is still so damn hard."

No one in the healthcare system offered childcare solutions to me, and no one seemed to notice they were absent. I understand that children pose germy risks and patients are receiving chemotherapy, but a hospital complex is a big place. There are a lot of hallways and rooms.

The local fitness center can supervise children โ€” from newborns to 12-year-olds โ€” in a lively room with play equipment and televisions, but in my experience, entire hospital systems had nothing to offer.

Cancer is expensive, even with good insurance

From the moment of my diagnosis, I was stressed about money.

Cancer is expensive. I needed to pay for extra childcare, medical bills, gas mileage, prescriptions, and unpaid leaves for surgeries and treatments. While I have health insurance through my husband's employer, I am self-employed as a therapist. If I cannot see patients, I do not generate income. In the worst-case scenario, I could lose my business and my salary.

At the start of a cancer diagnosis, the timeline is unclear, so I had to get creative with my surgical recoveries. Doctors recommend six weeks of rest after each major surgery, but without paid leave, I could only afford to take two weeks off after my surgeries.

I would prop myself up with pillows and see therapy clients by video. I returned to the office when I regained the ability to drive.

We had a little cash, which helped, and friends and neighbors provided meals and gift cards for groceries. My 90-year-old grandmother sent me a check. My mother flew across the country to help with my children for a month.

I don't know how anyone could survive this ordeal without friends and family because there is no other safety net.

Cancer centers need to adapt to their new population of patients

Two years later, my cancer treatment is now less intense.

Woman walking
The author wishes there was more support for young moms diagnosed with cancer.

Courtesy of the author

I'm back to a normal work schedule, and my kids are more independent. I don't have any detectable tumors inside my body, but doctors said they no longer use the term "remission" because hormone-positive breast cancer often recurs, sometimes decades later. There are no guarantees, but I'm optimistic.

I can accept that I am a breast cancer patient and "survivor." What I cannot accept is that the treatment process has to be so hard to navigate, especially as a working mother.

There should be ways for young mothers to feel seen and incorporated into the waiting rooms, the schedules, and the brochures. The cancer centers could help with flexible scheduling, easier phone systems, nurse navigators, on-site childcare, and grants for paid leave.

Moms work so hard to care for others. The system could care a little more for us.

Read the original article on Business Insider

โŒ