by Eric Garner, BCHD Senior Communications Specialist
Carol Schiewe refuses to let anything strip away her joy for life. And by anything the 57-year-old member of BCHD’s Center for Health & Fitness (CHF) means anything.
A malignant tumor in her breast that was larger than any her doctors had ever seen didn’t dampen it. A second cancer diagnosis just a year later, this time in her thyroid, couldn’t shake it. And being blindsided in early 2016 with news that she was just the 271st person in the world to be diagnosed with a rare degenerative brain disorder that threatens to leave her immobile, deaf and incontinent, well, that actually made her laugh.
“When they said I had superficial siderosis, I smiled and said ‘okay, well, check that one off the list,’” laughs Carol, a loving mother, wife and former registered dietitian for trauma and cancer units. “My reaction may seem odd to some, but there’s not much that can get me down at this point because I stopped taking myself so seriously a long time ago. I live in the moment and take the time to appreciate the life happening around me. This allows me to find joy in little things, like going to concerts with my daughter. My challenges are honestly just a blip on the radar.”
Carol applies this positive, can-do attitude to every aspect of her life, including fitness. Back in 2010, the year of her second cancer diagnosis, she joined the Center for Health & Fitness — a low-cost community gym operated by Beach Cities Health District in Redondo Beach — and began taking a slew of exercise classes, doing cardio and working with a personal trainer five to six days a week to keep her weight down and offset the negative effects of cancer treatments.
In the six years since, despite enduring an unimaginable number of surgeries, treatments, tests and doctor appointments, she still hasn’t deviated from her exercise routine. In fact, she’s lost 30 pounds, packed on lean muscle and reports to be “in the best physical health of my adult life.”
We sat down with Carol to hear more about her inspirational journey as well as to discover what fuels her insatiable resolve to keep fighting, laughing and living with contagious joy.
Q: Wow, where do we start? What was it like …
A: “Being diagnosed with cancer twice in two years, and then finding out about my brain disorder?”
Q: Yeah, how do you even begin to process that?
A: “The first cancer diagnosis was surreal. I was so used to being on the other end of that conversation from my time as a registered dietitian in cancer wards, that it really hit me hard to hear the news. But I did cancer by acceptance, meaning I didn’t go to any support groups or seek counseling. I just followed my doctor’s instructions, took the treatment and kept moving forward. Kept checking off the boxes and following the plan. That approach worked for me. One step, one day at a time. It’s like that song 99 bottles of beer on the wall, ‘you take one down, pass it around’ … I put my head down and just keep going. It’s gotten to the point where I keep getting dealt strange hands, but I’m not giving up. So bring it on.”
Q: You have such a good attitude, but what motivates you to keep fighting?
A: “I have this incredible kid, an amazing young woman who is 21 years old. Emma is brilliant, she listens to me and we can have conversations that most mothers and daughters don’t. If I didn’t have her, this might have been a different story. Because when I don’t want to take my medicine or do treatments, I’d remind myself that I’m doing this for my daughter. I want to see her grow up, graduate college and start a life. Without that motivation, yeah, I may not be able to keep going.”
Q: Is that the key to persevering when you have cancer — focusing on what or who you’re living for?
A: “Yes, but I also think you have to find the humor. Find the humor, humanity and the beauty, or whatever aspect of the situation that you consider to be positive in your life. It’s difficult to explain, but with my third diagnosis — the rare brain disorder — I really had to find a static focus and hone in on what keeps me going, which is laughing, my daughter and living with joy.”
Q: How did you receive the news that you became only the 271st person in the world diagnosed with superficial siderosis?
A: “When my doctor said that I have a degenerative brain disorder that only 271 people on earth have, I looked back at him and said ‘okay’ and then just laughed at the absurdity of it all – I mean who knows what that all means anyway?”
Q: But it’s a very serious disorder, right? How do you laugh in that situation?
A: “Well, what are you going to do? Yeah, it’s serious, but it’s not going to stop me in my tracks. I guess I’ve always had a very sick sense of humor, which helps. But as I’ve aged, I’ve become this different person who doesn’t take me too seriously. It took time to learn that life isn’t all about me and it’s so dynamic that
I have to evolve and just go with things. And that’s what I’m doing.”
Q: What role has exercise played in your recovery, either physically or mentally? Is it an escape?
A: “Honestly, I love the accepting atmosphere and people at the Center for Health & Fitness, but I hate working out, because I sweat like a pig and it’s really difficult for me. But I know that it’s what
I have to do to give myself a fighting chance. So, again, I put my head down and keep going.
Exercise isn’t really an escape for me — music is my escape per say; I absolutely love music — but I know that keeping my body in as good of condition as I can gives me a better chance to survive surgeries, treatment and to keep living with a good quality of life. For example, I was walking around the halls of Cedar Sinai completely unassisted the morning after my spinal surgery; and I was back working out at CHF within 12 days of the operation. That wouldn’t have happened if I didn’t make myself exercise.”
Q: Can you describe your current exercise routine?
A: “I go to the Center for Health & Fitness five to six days a week to take group exercise classes. I do Pilates, yoga, spinning — I love Manuela’s spinning class, she’s amazing. I also do at least an hour of cardio and, of course, meet with my trainer at least two to three times per week. Like I said, exercise doesn’t come easily to me, but it’s something that I know I need to do for my health. So I do it.”
Q: How do you motivate yourself to keep coming back to the gym in the midst of so much adversity?
A: “I don’t allow myself to wallow in my sorrow. I don’t have time for that. It’s just mind over matter: ‘I don’t mind, and it doesn’t matter.’ I also have a great personal trainer, Derick Malit, the man with the 100-watt smile, and a gym full of supporters and friends. So I keep coming to the Center for Health & Fitness, keep sweating and keep living.”
Q: What’s the current status of your cancer and superficial siderosis?
A: “I don’t get a pass on my breast cancer until I reach ten years, because of the size of the tumor.
So it’s active. I just had a genetic test done and two markers lit up, which likely means breast cancer and colon cancer. So I have to be vigilant because I will likely still develop something because of my family history and the scope of my tumor. It would be amazing if I dodge the bullet, but not likely. And there’s also a good chance I will start seeing symptoms like loss of hearing, possible loss of mobility and bowel control from my siderosis 15 to 20 years down the road. But that remains to be seen, so I’m not worrying about that stuff. Remember, I just keep smiling and moving forward.”
Q: So how do you plan to live out the remainder of your life, however long it may be?
A: “With joie de vivre.”
Q: What does that mean?
A: “That’s French for joy of living. I cannot allow cancer or anything else to define who I am. I have cancer, but cancer doesn’t have me. I have superficial siderosis, but it doesn’t have me. I’m not going to let it have me. So right now I’m going to keep laughing; I’m going to keep singing like a crazy person in my car; I’m going to keep going to concerts with my daughter; and I’m just going to keep loving life.”