Lourie’s cancer journey started with her father. She was 12 the first time her dad was diagnosed with cancer. She could hear him struggling in the bathroom and could see his skin turning dark from the chemotherapy, but her parents refused to tell her or her brother what was wrong.
“My parents were very proud Filipinos and, in our culture, if you get sick or you get cancer, it’s thought that you did something to deserve it, or you were being punished and you could be ostracized by your community. And so, my dad was diagnosed with colon cancer when I was 12, but they told no one.”
Lourie’s dad went through a recurrence when she was in high school, and he was diagnosed with colon cancer again after she graduated from college. At that point, she was in her mid-20s, and she wanted answers. “I sat down with him, and I said ‘Okay, dad, what is going on?’” He told her that she had to talk to his oncologist, because he couldn’t tell her himself.
In a visit soon after to their father’s oncologist, Lourie and her brother were shown X-rays of their father’s lungs. The oncologist explained that the colon cancer had spread to his lungs—and shared the prognosis. After months in the hospital, her father came home. During that week, they celebrated her parents’ wedding anniversary. Her father then returned to the hospital and passed away. Before his death, he gave Lourie a list of three things he wanted done: make sure her brother graduated from college, take care of their mother, and never tell anyone about his diagnosis. Lourie struggled for years with her father’s last wish; it felt like people were always asking what mysterious illness had taken her father.
When Lourie was in her last year of graduate school, at the age of 29, she started to feel sick. Her doctor dismissed her concerns, despite the pain and vaginal bleeding that Lourie was experiencing. She continued to suffer for a full year, until she finally agreed to see her cousin’s doctor, even though he wasn’t covered by her insurance. The day before her brother’s wedding, Lourie was diagnosed with stage 3 endometrial cancer. She promised the doctor that she would return after the wedding for more tests and for treatment.
Lourie’s doctors decided to treat her cancer as aggressively as possible, especially given her young age. Lourie first underwent surgery to remove her ovaries. “It was really tough when I woke up that morning and was sweating, and I wasn’t sure what happened to me.” Lourie was experiencing symptoms of surgery-induced menopause. She then received chemotherapy and radiation. “But as I started healing at home, going through treatment, I really felt like this was something that we needed to talk about. And I didn’t know if it was related to my dad or not; I just knew my dad was young when he was diagnosed. He was 39.”
After attending a presentation on hereditary cancers, Lourie made the decision to be tested for Lynch syndrome. The test results came back positive, and she was put on a different path of surveillance.
As part of her more-frequent cancer screenings, Lourie began having a colonoscopy every year. But after her doctor discovered polyps each time Lourie underwent a colonoscopy, her recommended colonoscopy schedule changed to twice a year, and then three times a year, and eventually to four colonoscopies a year. During one of her screenings, her doctor found a polyp that was very flat—too flat, he felt, to be removed. The doctor recommended that Lourie have her whole colon removed, and she then would have an ostomy bag to collect waste. But Lourie wanted to do everything she could to save her colon. “There was a quality-of-life issue. The only people that I met who had ostomy bags were in their 60s. I just didn’t want to do that.” Lourie then spoke with a Lynch syndrome expert and switched her insurance and medical center to be under his care. Her new medical team initially tried to remove the polyp, but the process for doing so was risky and difficult. It was decided that the right side of Lourie’s colon would be removed.
Nine months later, while Lourie was still healing from her surgery, her medical team discovered two suspicious spots on her body: one on her abdomen and one on her right thigh. Lourie was soon diagnosed with melanoma, which her doctors were able to surgically remove.
In addition to skin surveillance, Lourie continued to have routine colonoscopies to examine her remaining colon. Her doctor began to see polyps on that side. Most of the polyps he removed were found to be precancerous. One, however, was determined to be cancerous, and she had two colonoscopies within two weeks to ensure that that polyp was removed with clean margins—that no cancer cells in her colon remained.
Lourie also continued to be screened for gynecologic cancers, given her first cancer diagnosis. They found a precancerous condition, which was removed by Mohs surgery.
Lourie first began to have symptoms of irritable bowel syndrome, or IBS, after the right side of her colon was removed. So when she began regularly throwing up and her stomach hurt, she and her medical team were unsure if it was the IBS or something else. Her symptoms worsened, and she eventually found herself in horrendous pain and extremely tired. She couldn’t eat, and she lost 20 pounds in less than a month. She knew something was wrong. A CAT scan revealed a large sarcoma in her abdomen. She was told that this diagnosis was unrelated to Lynch syndrome but was likely due to the aggressive radiation she had received years before. Her surgeon spent 10 hours removing the sarcoma from her body. A few months later, she had recovered, but then several more tumors were discovered in her abdomen.
With this diagnosis, Lourie decided that she didn’t want to be as involved as she was before. “I’m someone who researches everything for everyone, but, in this case, I was like, ‘I don’t think I want to know. I don’t think I want to know how big they are. I don’t think I want to know how many. I just want them to be gone.’” She started two chemotherapy regimens soon after. One made her develop a rash and a fever, and the other would have resulted in hair loss if not for a cooling cap that she wore during treatment. The chemotherapy affected her taste buds; there were certain things that she could taste sometimes, like chocolate, peanut butter, and vinegar, but some days she couldn’t taste anything. During her sixth cycle of treatment, Lourie learned that her tumors had shrunk by 30%.
Lourie has never been alone during her journey. She is part of a young cancer support group, where she has found people to relate to and to share advice. One of the things Lourie struggled with the most during her hardest moments was the lack of communication between some of her friends and family. A friend in her support group advised her to adopt a different way of looking at the situation: “You’re weeding your garden. You have all of these beautiful flowers and beautiful things in your garden, and they’re still beautiful, but they’re not bringing anything to your life right now—they’re upsetting you. So you’re just weeding your garden and…you concentrate on the beautiful things that are around you, not on the things that aren’t around you.” Lourie has found that her garden might be smaller than it was before, but the things around her are amazing and inspiring.
Lourie has been able to rely on her friends, family, colleagues, and her beloved dogs. “I had really tough chemo…and I didn’t want to eat. And there was this one day where my mom was trying to get me to eat and I was like ‘I can’t eat, I don't want to eat. Stop trying to make me eat.’ And my German Shepherd, Woody, went to his dog bowl, and he picked up dog food in his mouth and he came to my bed and spit it out all over my bed. And he just looked at me and he was barking and barking, until I just looked at him and said ‘I’m not eating your food either.’”
Woody accompanied Lourie around the house when she needed emotional or physical support, gently nudging the back of her leg when her walking faltered and keeping watch over her while she slept. “The healing power of pets is pretty amazing.” A few years after Woody passed, Lourie adopted a new pet, Phineas J. Whoopie, who cuddles up next to her on her bad days, walks with her on her good days, and helps her heal. Phineas regularly joins her on walking meditations, when she focuses on breathing.
While Lourie always tries to stay positive and has taught herself new skills, like watercoloring, she believes that survivors should allow themselves moments or days when they just want to break down and cry. Lourie sees the toll that cancer has taken on her life and her family but still has gratitude. “I don't think that I’ve ever stopped fighting cancer or have ever stopped being concerned or talking about it….[But] I’m very grateful, so grateful for everything that I have and everything that I can do. I know that there are people that are worse off and need more help than I need….I’m grateful that anyone wants to know my story. I’m hopeful that there will be breakthroughs….And maybe I won’t benefit from it, but someone will benefit from it.”
Lourie has strived to change the narrative around cancer. She has worked on a variety of projects and was approached by members of the President’s Cancer Panel at the University of Southern California (USC) to share her story. Her mom was initially apprehensive of Lourie’s willingness to speak. “I told mom the only way that we are going to stop this…is if we talk about it.” And after Lourie’s presentation, both women received support from the audience.
After speaking at USC about her experiences, Lourie was presented with more opportunities to share her story and to learn about hereditary cancers. She has worked with the National Cancer Institute, the Centers for Disease Control and Prevention, and the American Cancer Society. Lourie also has become a patient advocate for others, to provide insight on the emotional aspects of cancer. She wants others to know that they have a choice in everything: their treatment plans, their doctors, and how much they want to know. “I think it’s so important when you’re going through something like this that you decide what level of information you want. You decide—that I want to know everything, or I don’t. And it’s okay if you don’t want to know everything….I am choosing to enjoy each day….Sometimes that’s all you can manage is one day at a time. But I still think it’s okay to dream, and I still think it’s okay to plan. You should not stop planning your life because you’re living one day at a time.”
Ultimately, Lourie seeks to make positive changes in the world. “I don’t want anyone else to have to suffer through this. And I want people in my culture to be able to talk about it without fear of losing their friends and losing their support and feeling afraid that they had done something bad, or that they were cursed….If sharing my story helps someone, then that’s all I want. I just want to rid the earth of this cancer, and I’m not a scientist, so I do it in any way I can. And if that means sharing my story, then that’s what I’ll do.”
May 6, 1966 – December 7, 2022
I just want to rid the earth of this cancer, and I’m not a scientist, so I do it in any way I can. And if that means sharing my story, then that’s what I’ll do.”