SEATTLE -- Put aside for a moment what you think you know about breast cancer. That’s because while there are many people who will beat the disease, there are others, who are terminal at diagnosis.
It's Monday morning and for two hours, Beth Caldwell will sit, hooked up to a machine, filling her body with a cancer-fighting drug, her son by her side.
Beth has stage 4 metastatic breast cancer.
Metastatic means the cancer has spread to her brain, her liver, lungs and bones.
Beth says she isn't just fighting for a cure, she's dying for one.
"Once your cancer is metastatic, it's never going away. it's something you're going to live with for the rest of your life, um, however long that is."
Between treatments, Beth focuses on being a mom to 5-year-old Maggie and 10-year-old Jim.
Beth and her husband J- have been married 15 years.
J says the cancer takes its toll.
“Before cancer we could split things. So you'll take a day off and get them to the dentist and now all that largely falls on me. she doesn't have a lot of energy."
It’s been almost three years since Beth was diagnosed.
She's been through chemo and radiation and lost her hair due to the intense treatment, but along the way, she also found a voice.
In 2015, Beth co-founded Met Up, an activist group pushing for change, and increased funding for metastatic breast cancer.
They hold die-ins across the country to honor those who lost the battle against this terrible disease and Beth says they’re shaking up what we think we know about breast cancer.
"Breast cancer is often portrayed as this happy, pink, feather boa; I survived, I'm going to put a pink bra on my dog and stuff it with balloons kind of activity. You know there's about 5-10 percent of us who are terminal at diagnosis and about 20-30 percent of early stage patients who will later metastasize and die of their breast cancer.”
The truth is, patients with metastatic breast cancer often don’t qualify for clinical trials.
Met Up says only 7 percent of all breast cancer funding goes toward researching metastatic disease.
It’s a reality Beth says has to change. She remembers the day her son Jim asked if she was going to die.
“I said someday buddy, but not today and he said OK. And then as I was tucking him into bed that night, he said, 'I’m going to be really sad when you die Mom.' I couldn’t talk. I just hugged him, kissed him goodnight and walked out of the room and just lost it and sat down on the floor and cried.”
For the Caldwells, finding care close to home was important.
Five years ago, Seattle Cancer Care Alliance opened this clinic at UW Medicine's Northwest Hospital, offering an option for people living in north Seattle.
For Beth, it meant not having to drive into downtown traffic for her treatments.
Dr. Edmond Marzbani is one of Beth’s doctors.
“Beth is currently on a study or being treated with immunotherapy because she does have an atypical variant of breast cancer and this is something that a group of oncologists, including myself, thought might be very effective for her.”
The other benefit the SCCA clinic offers is universal care rooms, allowing patients to stay in one place, bringing the care to them.
“So we designed the clinic, instead of having a patient go to the laboratory and walk up to radiology and then walk up to see their physician on another floor then finally go to get their chemotherapy on another floor, we said, what if we brought everything to the patient and the universal room concept really does that, ” said Marzbani.
It’s that attention to care that gives Beth hope. Also, being taken care of by a staff,she says feels like family.
“If I didn’t have my oncologist I would be terrified a lot more than I am. It’s terrifying having terminal cancer, but it would be even more so if I didn't have a doctor I feel like I can have a relationship with. I can tell him everything that’s going on,” says Beth.
Beth doesn’t know for sure how this story will end.
She’ll keep reading to her kids each day and being the voice for those who no longer have one.
A woman, an advocate looking cancer in the face with no plans of backing down.
“Janice Joplin said freedom’s just another world for nothing left to lose and that’s what having terminal cancer is like. It takes away a lot of fear in your life because you don’t have anything left to lose cause you’re going to lose your life.”