“We’re thriving—despite multiple myeloma!”
Gary, Christina, Karen and Tom know firsthand that managing multiple myeloma can be tough, but they’re not letting it keep them down! Here, their top tips for making the most of every day.
Gary Altman, Esq., 60, of Potomac, MD, was diagnosed in 2013.
Make sleep a priority. “Before I was diagnosed, my wife used to call me the Energizer Bunny. I was working, playing sports, traveling—I was on the move and active non-stop,” says Gary, who runs his own law firm. “Now I get tired much more easily, but I found it helps to keep a regular, earlier bedtime and allow myself to sleep in any day I don’t have to be up at a certain time.”
Don’t give up what you love. “I was a regular squash and racquetball player, but my doctor didn’t recommend I continue with those, since I’m more at risk for breaking a bone,” Gary explains. “So instead of giving up sports, I found ones that are safer. Now I play pickleball, which is kind of like a cross between ping-pong and badminton, and I love it.”
Tweak your diet. “I didn’t eat a very healthy diet before my diagnosis,” Gary admits. “But I also don’t think a total diet overhaul is going to be something anyone can stick with, so I started out making small changes. I cut back on sweets and junk food, and limited my red wine to weekends.”
Focus on family. “Since my diagnosis, my family dynamic has really changed,” says Gary, who has both a son and daughter. “I spend more time with them, and we appreciate that time we have more. My son just got married, and it was great to have the wedding to look forward to. And now I get to look forward to grandkids!”
Christina Neumann, 63, of Meadow Vista, CA, was diagnosed in 2005.
Get spiritual. After Christina had a stem cell transplant in 2006, she was put in an isolation unit for three weeks to recover. “It was very painful because I had never been away from my family,” she recalls. “So I listened to Buddhist chants on CDs. They have a soothing quality.”
Have a routine. Christina took a part-time job at the local library. She worked between 12 and 16 hours per week, which was ideal because she could not work eight-hour days due to fatigue. “It made a big difference,” says Christina. “It made me feel ‘normal.’ "
Write about your journey. Christina writes a blog about her experience with MM. “The blog, which is called ‘Tahoe Girl,’ has been cathartic,” she says. “It helps me process my feelings about the illness.”
Lose yourself in your favorite activity. “Find something you care about and keep doing it,” recommends Christina. She has always loved cooking, so she does it as often as possible now.
Lean on loved ones. “I’ve been married to my husband for more than 40 years, and he comes to all of my medical appointments,” says Christina. “He often sits there and says nothing, but his presence is comforting and reassuring. You need someone in your life to support you.”
Karen Brown, 44, of Portland, OR, was diagnosed in 2013.
Keep your immune system strong. “Because of my MM, my white blood cell counts go low from time to time. Sometimes this means I need to stay away from crowds or wear a mask. I take naps when needed, too.”
Bring on peace. “I pray to Jesus. Knowing He is with me every step of the way is a great comfort. Praising the Lord for the many blessings He has given me helps, as well as reading the Psalms. I also walk with friends, go on dates with my husband, listen to music, laugh with my kids and when possible see the sweet students and staff at the school where I taught. Caringbridge.org [a site that lets patients managing chronic health conditions create their own webpages] helps me. It is a great way to keep people up to date, and they can leave encouraging messages.”
Set up a meal train. “Sometimes MM leaves you too tired to cook, or at least cook something wholesome. MealTrain.com was so helpful—it’s a site that lets friends sign up to bring you meals. I am thankful for the amazing support I have!”
Stay on top of appointments. When you’re managing a chronic condition like MM, it can get overwhelming to keep track of medical appointments, prescription refills and test schedules. “I use an app called MyChart,” Karen says. “I also write things on the calendar in our house and in a notebook. It keeps everything organized.”
Take “advice” with a grain of salt. “I received lots of ‘interesting’ ideas about how to get rid of my cancer,” Karen says. “People mean well, but it can be overwhelming. You don’t have to listen to everyone’s advice on what diet you should be on, what supplement to take, etc. Do what seems right for you, after you talk with your doctor.”
Tom Zapcic, 53, of Middletown, NJ, was diagnosed in 2008.
Get out of the house. “Some people like to go to therapy. My wife and I just like to be active. She was diagnosed with sarcoma, which is a rare disease, a year before I was diagnosed with multiple myeloma. She’s a national spokesperson. I do a lot of foundation event photography. I’ve done about 200 events in the last two years, so it’s been pretty interesting. I try to travel when able, even if it’s just to a park in northern New Jersey. Being outdoors is very therapeutic.”
Take care of your body and your mind. “Health is a mindset, an attitude. It’s positive thinking, keeping your immune system strong, eating well, exercising. It’s just common sense. I don’t eat fast food anymore. I like to have a piece of red meat once a month or so, a hamburger or a steak or something, but usually it’s chicken, fish and vegetables. We do a little bit of juicing, my wife more than me. Running is a real challenge because I have mild neuropathy [damage to the nerves, caused most often by disease or medication], mostly in my feet. So I walk, use the elliptical machine, go biking. My wife is a certified yoga instructor, so yoga has really helped me a lot.”
Have goals—but be flexible. “I set goals to stay motivated, but there are ebbs and flows with MM. One of my bucket list goals was to run the Spring Lake 5, which is a big race down here [in coastal New Jersey]. After four miles my feet were just screaming and I basically walked the last mile. You just have to adjust what you’re doing.”
Give! “We do a lot of charity work, which we’ve always done anyway. Giving of yourself allows you to feel that positive energy back. We actually started a nonprofit organization called Kick Cancer Overboard. Royal Caribbean is our partner. We’ve sent more than 150 families adversely affected by cancer on cruises, for free.”