As a nurse who started her career on the oncology floor, Heather Caro thought she understood cancer. She had administered chemotherapy treatments, participated in charity runs and met many cancer patients over the years.
But in 2012, Caro received a breast cancer diagnosis of her own — at just 32 years old — and realized just how little she really did know.
She understood the medical jargon. In fact, when she saw the ultrasound of the lump in her armpit (which she had noticed while taking off her bra), she knew right away that it was cancer. But the reality of life post-diagnosis was different than she ever imagined, she says.
“I really felt like I understood what it was like to be close to this disease,” Caro, now 37, tells PEOPLE. “But when I was diagnosed, I realized that I really had no clue.”
At the time of her diagnosis in April 2012, Caro, her husband, Chris, and their two children, Madeline, now 15, and Teague, now 11, had recently relocated to Coeur d’Alene, Idaho. She had just started a new job as a nurse at a hospital and because of her switch in jobs, she had a three-month lapse in insurance coverage. So when she felt the lump in her armpit about a month into that lapse, she waited another two months before going to the doctor. She feared that if she did go in, she’d given the label of having a pre-existing condition, and would have trouble getting insurance at her new job, so she waited to get it checked out.
The day after her insurance kicked in, she went to the doctor for her annual exam. A mammogram was negative because of the location of the lump, but an ultrasound was able to catch it. The lump was biopsied, and it was a “whirlwind” from then on, she says.
Right in the middle of that whirlwind came more unexpected news: Caro lost her job. She says she wasn’t fired for having cancer, but because of the time she had to take off due to treatment — which ended up being eight months. Caro says she wasn’t covered by the Family and Medical Leave Act (FMLA), either, because she had only been at her job for three months and a person is only eligible to be covered by FMLA if you’ve been with your company for a year.
“I still remember getting that phone call from my HR department,” she says. “I was just starting treatment. I was so sick, I couldn’t feed myself.”
Despite help from fundraisers, family and friends, she is still dealing with the financial repercussions of losing her job five years after her diagnosis. “You’re never going to be able to retire, because you’re going to be paying off these stupid medical debts for the rest of your life,” she says.
“The rest of life doesn’t stop when you get sick,” she adds. “It feels like it should, but it doesn’t. You still have bills, you still have to pay your mortgage and keep the power on. In fact, it’s becomes more expensive because now you have all these medical bills, and have special meals and supplements in order to stay healthy.”
And for young women dealing with cancer, these financial and logistical problems can be even more pronounced. As Jennifer Merschdorf, CEO of the Young Survival Coalition, a support organization for women who are diagnosed with breast cancer under the age of 40, says: “It’s not like in your twenties you’ve saved this huge nest egg that you can use to offset these huge medical expenses.”
In the years since she was diagnosed, Caro has gotten involved with breast cancer advocacy, and has learned that her experience as a young breast cancer patient isn’t an isolated one.
“I remember feeling so shocked,” she says of her diagnosis at such a young age. “I kind of had this idea that I was protected. How can that happen? But as time has gone on, I’ve realized that it happens all the time.”
Caro went onto have a bilateral mastectomy on June 4, 2012 and had reconstruction afterward. But following the reconstruction, she developed a surgical site infection. She almost developed sepsis, which led her back to the doctor later that month, where she had the reconstruction reversed, and made the decision not to have them reconstructed again.
“When even the fake boobs were trying to kill me, I figured I needed to just concentrate on being well and strong,” she says.
Today, she credits her husband’s support as a factor in her decision to remove her reconstructed breasts after she developed a surgical site infection that made it incredibly painful for her to do the most basic of tasks, like wash her hair or lift her arms.
“He was the one who really pushed me, he said, ‘Breasts aren’t worth your life,’ ” she tells PEOPLE. “I felt like a prisoner in my own body. I never want to feel that way again.”
She then went through six rounds of chemotherapy and 29 rounds of radiation, which forever changed her both physically and emotionally, she says.
“You’ll never get the body back that you lost from this disease,” she says. “That’s gone. And it certainly has shaped the trajectory of my life, and the lens that I view health.”
Though Caro, who writes the blog, My life, distilled, says there’s “never a good time to get cancer,” as a mother of two young children, she felt her concerns were different from those of many other cancer patients.
“I’m not going through the same things that many people who are diagnosed with breast cancer go through,” she says of her experience. “They don’t have to worry about how to raise your kids without them needing psychiatric evaluations. I really felt like, as a mother, I had let them down in so many ways.”
Leaning on the people in her life made all the difference in her experience, she says.
“It takes a village to get through this,” she says. “There are people out there who will help you through, you just have to left them. You can’t do this alone. And thankfully, you don’t have to.”