“I have power in my voice”: Deb Blake-Ontiveros on speaking up during breast cancer treatment

Instead, doctors discovered something unexpected — a second breast cancer, this one stage III and estrogen receptor-positive.

“It was overwhelming,” Deb says. “I thought, ‘Seriously? We’re doing this, too?’” To treat this new early-stage diagnosis, Deb’s healthcare team recommended pausing treatment for her metastatic diagnosis as she had no evidence of disease. She would undergo surgery, chemotherapy, radiation, and later oral therapy.

Along the way, she learned that treatment does not always have to be “all or nothing.” Sometimes patients and doctors can work together to adjust medications or doses when side effects become too difficult, while still continuing cancer care. More importantly, she learned something else: Speaking up is not weakness.

“I have power in my voice,” Deb says. “I am my best advocate.”

“I thought I had to push through”

At first, Deb approached treatment for the early-stage cancer the same way she had approached many difficult moments in her life: by enduring. “I thought I could do this because I’m tough,” she says.

She began AC-T chemotherapy, including doxorubicin (brand name Adriamycin), often called “the red devil” because of its bright color and intense side effects. Although Deb had gone through chemotherapy before, this regimen affected her differently. “I just wasn’t prepared for how long I was going to feel so sick,” she says.

Even when she felt terrible, she continued showing up for treatment. At her third appointment, Deb arrived expecting another routine infusion. Instead, a nurse noticed she looked unwell and had a fever. Bloodwork showed her white blood cell count had dropped dangerously low, and she was hospitalized for several days.

Looking back, she realizes she hadn’t recognized how sick she had become. “I thought, ‘This is chemo. This is what happens,’” she says.

While in the hospital, Deb began thinking about whether she could continue treatment as planned. Originally scheduled for four rounds of doxorubicin, she didn’t want to go through another cycle and end up in the hospital again. Still, asking for a change felt emotionally difficult. Raised by a strong Latina mother who handled any challenge without complaint, Deb had learned early to keep going no matter what. “You’re taught to handle it,” she says. “You do what you need to do.” And that mindset followed her into treatment.

“I felt like something was wrong with me because I couldn’t finish,” she says. “I was very hard on myself.”

Her oncologist reassured her that because she had already completed three rounds, skipping the fourth was unlikely to significantly affect her outcome. The conversation changed how Deb understood advocacy and care.

“If he had told me it would make a huge difference, I probably would have forced myself to do it,” she says. Instead, they moved on to the next phase of treatment.

“There has to be a balance”

After chemotherapy and radiation, Deb started abemaciclib (Verzenio), an oral targeted therapy often used to reduce recurrence risk in hormone receptor-positive breast cancer.

She felt hopeful, at first. She researched the medication carefully, joined online support groups, and prepared herself for possible side effects. “I really wanted to try my best because I knew it was a great medication,” she says. But shortly after starting treatment, Deb became severely ill. “It was more than GI issues,” she says. “I was vomiting constantly. I couldn’t leave the bathroom.” Even then, she tried to push through. Deb, like many patients, worried that asking for a dose adjustment meant she was failing treatment or “quitting.” When her oncologist lowered the dose, she hoped the changes would help enough for her to continue.

Instead, the symptoms continued.

Deb ended up in the emergency room after relentless vomiting and dehydration – on the day of her 12-year-old daughter’s birthday. “I remember thinking, ‘I cannot take this medication anymore,’” she says.

Stopping the medication was a series of decisions. Deb tried multiple dose reductions and remained in close communication with her healthcare team before deciding the side effects had become unsustainable.

“There has to be a balance,” she says. “You can’t have treatment completely take over your life.”

She knows. The strain had reached beyond Deb herself. During this period, her marriage also came to an end, another loss during an already overwhelming season of treatment.

Her care team later transitioned her to other medications, including hormone therapy and Lupron injections, while continuing to closely monitor both cancers.

“There’s no way I could have continued long term being that sick,” she says. Today, Deb still experiences fatigue and side effects, but she feels significantly better than she did during the most difficult periods of treatment.

Finding her voice

As a Latina advocate, Deb believes cultural expectations can make it difficult for some patients to talk openly about side effects or ask questions during treatment. “In Latino culture, especially for women and mothers, you’re expected to be strong all the time,” she says.

Yet, she also knows language barriers can make those conversations even harder. “When English isn’t your first language, you may get nervous and not speak up at all,” she says.

“This is your body and your life,” she says. “You deserve to be part of the decision-making process.” Deb encourages Spanish-speaking patients to ask for interpreters, bring support people to appointments, and remember that they deserve to fully understand their care.

Deb traveled to San Antonio for a Latino cancer patient advocate training program earlier this year. She joined advocates from across the country living with cancers ranging from leukemia to colon cancer. This spring, Deb moved into a new apartment a few miles from her old home, where boxes still wait to be unpacked between treatments every three weeks, advocacy work, and daily life with her daughter. She hopes sharing her story helps others feel less alone and advocate for themselves, especially people struggling silently through severe side effects.

“If something is bothering you, speak up. You’re not going to get the help you need unless you say something,” Deb says. “I have power in my voice.”