At 68 years young Marge Brauer is a retired teacher and business owner “enjoying life”. Spending time at home in Indiana or vacationing at her “happy place” in Florida, you may find her riding her bike, playing shuffleboard, or socializing at a community gathering. But keeping up this lifestyle isn’t as simple as it may look to the unknowing observer. Because for the last 5 years Marge Brauer has been living with leiomyosarcoma, a rare and aggressive form of cancer.
Marge describes that due to both her cancer and treatments, there are many days she wakes up fatigued or depressed, not wanting leave the house, or even get out of bed. But over the past 5 years, Marge has pushed herself to get past the fatigue or depression by being active. As she has done this, she has been much happier falling asleep at night due to the “good exhaustion” her active life provides instead of being controlled by fatigue and depression brought on by the disease.
While Marge is reaping both physical and mental benefits of pushing herself, she also expresses the frustration that comes along with her efforts, “My husband and daughter in law are very supportive and see me when I am struggling. Other friends, family, and neighbors see me out and say things like ‘You look great, you’re doing great, or you are so strong’. I know they mean well, but I just want to scream. I don’t feel like I’m looking great or doing great, and I definitely don’t feel strong … While I might be out now, I may barely have any energy in an hour. It’s important for me to stay positive and make the best of my life, but then because I appear positive, everyone thinks I’m fine. Meanwhile I struggle on a day to day basis”.
In order to help her cope with emotions brought on by those well-meaning, but misplaced comments, Marge has found comfort in support groups of fellow patients who have a shared life experience. “My advice to any cancer patient is to find a local support group where you’ll find other people who know exactly what you are going through. This will help you to not feel alone. They’ll understand your frustrations. Plus, you can learn so much more about your disease and treatment options”. For people like Marge who live with a rare cancer or in a small community, there may not be local support groups available. In those cases, Marge advocates for “online support groups” where people from around the world share, comfort, and educate each other.
As a former teacher, Marge’s quest for knowledge has never stopped. Through the support groups and her online research, she has educated herself on her diagnosis, treatment options, and provider options. She encourages her fellow survivors to do the same. “The more information you have the better you can advocate for your health”.
Marge describes the power she feels having gained this knowledge. She recalls a visit in September 2023, “I always review my labs, scans, test results. I think everyone should. You need to understand so you can talk to your doctor and advocate for yourself. You must have a doctor who you know will listen. Dr. Kassar always takes the time when I need it. On this visit in September 2023, I reviewed a radiologist report and was concerned with the radiologist’s conclusions. I pointed this out to Dr. Kassar. He took the time to listen, review the report, evaluate it further, and we changed the course of action”. This change of course may have stopped Marge’s health from taking an unnecessary change for the worse.
With a smile Marge relayed “I am a “THRIVER”, not a survivor. We don’t survive this cancer. But we can thrive! At this moment, I am thriving!” “In fact”, Marge reports, “This week's scans showed stability!”
She is grateful for advancements in medicine, the efforts & knowledge of her doctors, the support of family, and having a treatment team close to home. But as Marge’s story illustrates, having the determination to push yourself, the knowledge to advocate for yourself, and the emotional support of fellow “thrivers” are the key components to “enjoying life”.
