Kathleen shares her story
Having cerebral palsy her whole life, Kathleen is used to dealing with other people’s lack of knowledge about her condition. But when she got diagnosed with MBC, she was surprised to find others grappling to understand that, too. Now she encourages people living with MBC, and those who support them, to learn as much as they can.
I’d never heard of MBC before my own diagnosis. I was diagnosed with MBC in 2018, after severe back pain that turned out to be a metastatic lesion in my spine. Soon enough, I realized that MBC is a mystery to many. Most people don't understand how MBC is different from early-stage breast cancer. People ask me all the time when my treatment will end and if I'm cured yet. I will be in active treatment for the rest of my life, dealing with side effects and the very real possibility that my cancer will spread further. Not many people understand my cerebral palsy (CP) when they first meet me. People just don’t know what to say. All my life, I’ve been educating people about my body. I value the opportunities to educate, although sometimes it is tiring. It has given me skills that now help me handle people’s misperceptions about MBC. It’s hard to talk about metastatic breast cancer (MBC) sometimes. I have great hope, but the statistics are scary. I want my friends, family, and colleagues to be comfortable talking about the reality of MBC. When I told my family and friends that I had MBC, some were very supportive, but others have been distant. Some people tell me I’ll be fine, and I know they’re trying to cheer me up. But sometimes it can feel dismissive, like denial. In a strange way, it can feel like pressure, like I’m supposed to be fine and never need help. In hindsight, I’m not sure I should have told so many people about my diagnosis until I had a plan. People don’t know how to “handle” MBC, and even though some people describe me as “super smart,” I didn’t know enough at the time to educate them. I first should have educated myself more. Dealing with people who just don’t understand has inspired me to learn a lot about MBC, and now I try hard to educate them about it. My treatment isn’t easy. I’m on an oral therapy and it’s hard to tell if the side effects are caused by the drug or the cancer. In any case, my muscle and joint pain are made worse by the cancer medicine and, to be honest, it’s been a struggle. My sense of humor has certainly made it easier for me to deal with everything. I definitely recommend humor as a way to get out of feeling isolated. I still work full-time as a neuroscientist. I lead a research team that is working to develop better therapies for children with cerebral palsy. I’ve always been inspired by the children we work with. Now that I also have MBC, I feel super motivated to educate others. I have a speech impairment from my CP. My MBC drugs cause mouth sores and dryness, making it harder to speak clearly. I wish more people would understand. I want to accomplish so much more, and my communication challenges make it harder at times. That’s one reason I am happy to participate in this campaign—to share my story and be heard. Sometimes, dealing with my cancer feels like a full-time job, too—appointments, scans, the occasional visit to urgent care—these take quite a bit of time! I also spend time researching MBC treatments. I think it’s important for all of us to be proactive and learn as much as we can about the drugs and the trials. In other words, it’s important to “own” our treatment. It’s true that sometimes I feel isolated and sad. That’s why I think it’s a really good idea for those with MBC to find support from family and friends. When I feel down, that’s when I talk to my friends. It helps most when people just listen. I get tired more now so I can’t do as much, but I still love going to events with friends or just hanging out. I enjoy being involved at my church. I enjoy doing things that don’t have anything to do with cancer. MBC will always be a part of my life, and I’m learning to adapt. MBC hasn’t stopped me from living. I even earned my black belt in taekwondo and got a promotion at work after my MBC diagnosis! What I really want to do now is be an advocate for women with MBC, and I can do that by participating in this program. As a scientist, I feel I could help them understand more about clinical trials—what the trials are, how they can help patients, what you need to know to determine if it’s the right trial for you, all that stuff. Research is how we will discover better therapies.
I think it’s important for all of us to be proactive and learn as much as we can about the drugs and the trials. In other words, it’s important to ‘own’ our treatment.”— Kathleen
So many women in the MBC community have supported me—and this is one way I can give back
Need someone to talk to?
Cancer Support Helpline: 1-888-793-9355
CancerCare’s Hopeline: 1-800-813-HOPE (4673)
Living Beyond Breast Cancer (LBBC) Breast Cancer Helpline: 1-888-753-5222
You don't have to do this alone
Connect with support, your way, with the Facing MBC Together app.Learn more