Change of plans

Amanda Curtis is having a typical day for a 30-year-old woman. Her 1-year-old son, Brayden, is playing on the floor with his toys, occasionally glancing at his mother to flash a toothy grin. Her 7-year-old daughter, Brooklyn, is at school and due home soon, as is her husband, Justin, who’s at work.

The next day, however, is not the kind most 30-year-olds have to experience: It’s her 16th and final day of chemotherapy. She’s been going to these sessions—joining women twice her age—for the past 24 weeks, since being diagnosed in April with inflammatory breast cancer at age 29.

“I was in shock,” she says of the day she was diagnosed. She had no family history of breast cancer. The news was wholly unexpected. “You just kind of go numb. I didn’t go into hysterics. We didn’t have a choice but to fight it because of the kids.”

Amanda first knew something was wrong in late February. Her breasts had become inflamed and painful. Her doctor thought the new mother had mastitis—an infection typically seen in breastfeeding women that involves pain, swelling, and redness in the breast. But Amanda had stopped breastfeeding Brayden, then 5-months-old, a couple of months before. She took antibiotics for mastitis, anyway, to no effect. Her first ultrasound showed no tumors, and, assuming it was mastitis, her gynecologist told her to wait a few months to see what happens, advice she’s glad she didn’t take.

“I knew personally it wasn’t mastitis,” she says. “I knew. The antibiotics weren’t touching it. It was obviously something.”

She asked for a second ultrasound.

“I work in a hospital, so I’m a little more persistent when I think something is wrong,” she says. Two tumors were found. She was a stage three, meaning the cancer had advanced but not spread to other organs, as a stage four would indicate.

Inflammatory breast cancer (IBC) tends to grow in sheets or is felt as a mass, rather than a lump. It’s rare, accounting for only 1 to 5 percent of all breast cancers in the United States, and it’s aggressive, with an average five-year-survival rate of 25 to 50 percent. It’s found more in younger women than other forms of breast cancer, and it mimics mastitis because cancer cells block the lymph vessels in the breast’s skin, which causes the breast to become inflamed and swollen.

Amanda had her first chemo treatment 11 days after her diagnosis. On Oct. 7, she’ll have one breast removed with a mastectomy, followed by radiation in November, then a second mastectomy and reconstructive surgery next spring.

“It’s never been a question but to do everything we can,” says Amanda. “The surgeon told me we had one shot to kill it. Being so close to stage four and the aggressive stage three, we had to attack it hard.”

Remote control

The Curtis family wasn’t sure how they would manage the daily tasks of work and family in addition to dealing with cancer.

“I was like, ‘What am I going to do? I have a 6-month-old and a 6-year-old.”

They first thought they’d have to shuffle their kids among friends while Amanda went to and recovered from chemotherapy. But Justin’s mom, who lives in Oregon, came to stay with the family, cooking, cleaning, picking the kids up from school and daycare and helping out where it was needed. And Amanda’s mother, who also lives in Oregon, will stay with her when she has her first mastectomy. While thankful for her mother-in-law’s help, Amanda had mixed emotions about it.

“When it’s your kid’s first year, you think about being a new mom and doing all the experiences,” says Amanda. “That was hard for me, When my mother-in-law first came, I felt she was taking the mother role from me. Especially being an A type, I was like, ‘You can’t take that from me, it’s my stuff.’ My husband put it in perspective for me of her helping, but at first you’re the territorial mom. That’s what I’m supposed to do.”

Amanda has had to let a lot of things fall out of her control, which she says has been both difficult and liberating.

“We have a new perspective on life now,” she says. “I don’t stress about the stuff I normally would. To me, it’s all about family. I used to worry about work and finances. I don’t stress about that now. When you get faced with something as precious as life and death, you don’t realize it until it could be taken away. Before, I wouldn’t have time to play a game with my daughter; now I do. I wish everybody could get the perspective I have on life now without getting sick. It almost releases you.”

Cosmetic stuff

Amanda sits in a chair in her kitchen wearing a pink dress, pink breast cancer awareness bracelet and bright pink nail polish on her toes. Her hair, which was once halfway down her back, is a short stubble, growing back after having fallen out. Wigs were a hindrance and an annoyance for her, so she doesn’t wear one.

“It is what it is,” says Amanda. “I have cancer. When you look at me, you can tell I have cancer.”

While Brayden is too young to register the changes happening with his mom, Amanda knew that Brookyln would notice.

“My little girl is really bright, and she’s on it,” says Amanda. “We decided we were just going to be honest with her. We said, ‘Mommy is going to be sick for a while,’ and we showed her the brochure. She’s been OK with me losing my hair.” But it can be hard for Brooklyn when people stare. Some people stare with a softness in their eyes; others are just rude.

“I’m hoping to show my daughter not to care about looks, to just be yourself,” says Amanda. “Hopefully, that’s one thing she gets out of this.”

Amanda does admit to having some self-esteem issues regarding losing her breasts.

“I’ve been going up and down with that. I’ve heard a lot of people say, ‘It’s just a boob.’ But you grow up with that. I don’t think I identify myself as a woman by my breasts, but I think it’s going to be hard.”

She and her husband have been together for 11 years and married for nine. She says Justin has been a big support. When asked how he’s dealt with her diagnosis, tears spring to her eyes. “I think the husband wants to be the provider, the protector,” she says. “He went through a really hard time because there’s nothing he can do but be there.”

“Everyone talks about me and the surgeries and how it will affect me,” says Justin. “That doesn’t matter. Just as long as she’s alive. That’s what matters, not the cosmetic stuff.”

Positive type

While the future is unclear, Amanda remains positive.

While many cancer patients find solace and information in support groups, Amanda finds them depressing and chooses not to go. She also doesn’t spend a lot of time online researching the form and possible causes of her cancer. She looked up the prognosis online once. It said 40 percent. She shut off the computer.

“Mine is too scary to look into,” she says. “I think fighting cancer, at least 50 percent of it is mental. You have to have a positive attitude, or you’re not going to get through it.” Positivity, a good support team, and … she leans down to Brayden who smiles back at her. She says to him, “And staring at you makes it better! You can’t help but be on your toes.”

While some might prefer to keep their struggle with cancer private, Amanda is open.

“It’s not a shameful thing,” she says. “I didn’t ask for it. I don’t think I would have gotten this type of cancer at this young of an age if I was supposed to be quiet about it.”

She wants young people to know they’re not invincible.

“You’re starting out, getting married, having kids—you never think that in your late 20s or 30s you’ll get cancer. I don’t think you really realize how precious life is until you realize it might be over.”

Armed with their new life perspective, the Curtises have been making changes to improve the health of the whole family. Justin is going to the gym more, they’re eating more organic food, they joined a Community Supported Agriculture (CSA) program, and they’re looking into cleaning their floors with things like vinegar and water rather than toxic cleaners.

“Because it wasn’t genetic,” says Justin. “So it had to come from somewhere.”