Joie de Vivre
Two types of cancer and an extremely rare neurological disease won’t stop one South Bay resident’s tireless pursuit of health and happiness.
Written by Eric Garner
Being diagnosed with cancer twice in two years, and then finding out about my brain disorder?
Yeah, how do you even begin to process that?
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.
You have such a good attitude, but what motivates you to keep fighting?
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.
“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.”
Is that the key to persevering when you have cancer: focusing on what or whom you’re living for?
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.
How did you receive the news that you became only the 271st person in the world diagnosed with superficial siderosis?
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, “OK,” and then just laughed at the absurdity of it all. I mean who knows what that all means anyway?
But it’s a very serious disorder, right? How do you laugh in that situation?
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.
What role has exercise played in your recovery—either physically or mentally? Is it an escape?
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 se. 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.
How do you motivate yourself to keep coming back to the gym in the midst of so much adversity?
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.
What’s the current status of your cancer and superficial siderosis?
I don’t get a pass on my breast cancer until I reach 10 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.
The medical team at The Health & Wellness Center @ BCO helps patients find the path to their best life.