Survivor Stories: Susie Ulloa
What can people with cancer and their caregivers learn from one woman’s story of breast cancer survivorship? How to be an ally, how to find your “silver lining,” how to manage working during treatment, and how to move forward.
“Maybe you are supposed to be here, but just temporarily.”
If you’ve ever experienced a cancer diagnosis or cared for someone who has, you might have thought someone with a medical background had an advantage. You might have thought they’d be able to jump through the typical hoops of the cancer system with ease, booking appointments in no time, feeling like a champ throughout treatments, knowing where to get the best wigs, and getting through their treatment with some sort of secret, insider tips. But when Susie Ulloa, a Physician and Nurse with over 20 years of experience, was first diagnosed with breast cancer in 2014, she felt completely overwhelmed. “What are we doing here,” she asked her husband, Jorge, “This is not where I belong.”
His response, “Maybe you are supposed to be here, but just temporarily,” seems a bit fortuitous now as Susie is spending her days coordinating a breast cancer support group, collaborating with the American Cancer Society’s Making Strides Against Breast Cancer Walk, and working as an Oncology Nurse Navigator for Thyme Care. But before any of that could happen, Susie would learn about the cancer experience from own diagnosis.
Diagnosis and support: How to be a better ally and caregiver
In July of 2014, Susie had a routine, normal day. She doesn’t remember much about the day itself—what she did or what she was wearing—but she does remember something telling her to do a routine self-check during the shower. “To my surprise and disbelief, I found a lump on my right breast and felt my legs start to shake and give way,” she says in her book Winning My Battle: A Breast Cancer Journey. She describes the moment as “a storm of thoughts,” but fortunately, she was able to find comfort from her best friend and husband.
Susie describes the hug she received from her husband as a hug “that seemed to last a lifetime.” The moment stuck with her throughout her treatment. These small moments of comfort, love, and empathy can make such a huge difference to someone who has just received a cancer diagnosis. Little things, like offering specific ways you can help, are Susie’s recommendation to caregivers looking for ways to help. “Oftentimes, people say, ‘Let me know if you need anything.’ They mean it, but it would be better to offer something specific. For a lot of people, it is difficult to ask for the things they need,” she says. Some questions you might ask are:
- Can I drive you to and from any upcoming appointments?
- I want to make you dinner this week. What would you like and when is a good time?
- Would it be helpful if I came by to clean up around the house sometime?
- How are your kids or pets doing? Do you need someone to watch them anytime soon?
- I’m sure attending all of these appointments can be overwhelming. Do you need any help organizing your questions?
- Do you have someone to help take notes during your doctor's appointments? I can help with that if you’d like.
- Can I pick up any prescriptions for you?
- I’m running errands today. Do you need anything?
- Would it be helpful for me to schedule your appointments? I can call your doctors and figure out what times work best.
- Can I be there with you during your treatment to take notes for you?
- Do you need company?
Reinvention: Where Susie found her silver lining
In her book, Susie noted, “Breast cancer attacks your very core as a woman, affecting far more than your breast(s).” She knew as soon as she started chemotherapy treatment she would lose her hair and prepped herself by buying wigs and scarves; however, in her book she explains how she felt frustrated and shaken by seeing chunks of her hair fall out in the shower.
But Susie used the experience as an opportunity to reinvent herself. “If I was losing my hair, I would do it on my own terms,” she says. It’s this new version of Susie that wanted to hold onto herself even harder, and turned to new, bright shades of makeup, colorful scarves, and jewelry that matched her outfits. Even though she might not have seen the typical version of herself reflected back in the mirror, Susie’s incredibly strong personality still shined through. Her husband describes her during that time: “I saw her every day after the chemo, her body suffering from the pain but her soul intact.”
For those newly diagnosed with cancer, Susie says she found a lot of strength in a quote from another cancer patient about not asking “why me” because no one can answer that. She says, “The most important thing is to confirm who loves you deeply and who is by your side.”
Work and treatment: How to balance responsibilities with your new normal
During her treatment, Susie continued to work as a Nurse. She says she had a wonderful boss and coworkers who were supportive throughout the experience. She took intermittent FMLA (family and medical leave) for surgeries and major treatments like getting her port inserted and then removed. But during her six rounds of chemotherapy, Susie would only take Thursdays and Fridays off. She would have treatment on Thursdays, recover from Friday to Sunday, and then be back to work on Monday. Although she was at work most of the time, Susie says it was “always very clear if I needed anything I could take time off.”
If you’re someone trying to figure out how to work while going through treatment, Susie recommends, “Always tell your employer what you’re going through—whether it’s detailed or not as deep—it’s important for them to know what’s going on. There will be times when you won’t be able to perform, and it’s good for them to know so they can support you the best way they can.”
She also recommends taking advantage of whatever small, helpful amenities might be available at your workplace. For Susie, that was the hospital valet. “My husband would give me cash each week and just say, ‘Pay those people to park your car.’” While your workplace might not have this exact setup, find whatever your “valet parking” is: whether it’s getting food delivered for lunch, taking advantage of time off, or just taking frequent breaks. Have an open conversation with your employer and give yourself the space and ability to rest as your body needs it.
Healing: The journey to heal doesn’t stop in remission
After one major surgery, port installation and removal, six rounds of chemo, and thirty three treatments of radiation, Susie is now in remission. However, it’s not as simple as jumping straight to the happy ending. “You come from seeing all of these doctors and having all of these phone numbers and being in this well-oiled machine. And it was like, okay, this is great news, but then you have to take a step back,” she says, “It’s another drastic change.”
How do you transition from this major life event, back into your old routine? Susie recommends people with cancer never let go of their relationships with caregivers and health providers. The goal is that eventually you won’t have to see them all of the time—not eliminate the need for them completely.
Once Susie was feeling better, she felt the need to do more. She started volunteering for the American Cancer Society, supporting people with cancer over the phone. In May of 2021, she joined Thyme Care as an Oncology Nurse, where she continues to support people with cancer through their diagnosis and treatment. “I just felt the need to do that,” she says, “I felt the need to pay it forward to someone else. Every opportunity there is to support, we do—my husband and my children.”