Pat’s Place: One Way Or Another, We All Need To Keep Moving!
A majority of multiple myeloma patients experience some kind of bone involvement. In other words, myeloma has negatively affected their bones. Lesions, a fancy word for holes, in and around the bone are common. So is a more general “osteoporosis”-like weakening of the bone.
Those of you who are fortunate enough not to have had multiple myeloma hurt your bones should take advantage of your good fortune by engaging in a systematic and rigorous exercise program.
I know, I know—who wants to exercise when they aren’t feeling well? Dex, chemo, bisphosphonate IV’s—YUCK!
Toss in any number of other underlying health conditions, and it is easy to forget to exercise.
We all need exercise. It helps keep our bodies working. It helps us look and feel younger. Not only that, but exercising helps keep your bones dense and strong. You can see how important that is for those of us with multiple myeloma.
But what I wanted to address in this week’s column are the patients who have had some bone involvement/damage.
Most doctors want to play it safe when it comes to your health. So the tendency is for them to restrict what types of exercise you engage in and how much weight you lift.
This is understandable—but often misguided. For example, I just heard from a patient who has a large lesion in his thigh bone. Concerned that the weakened bone may fracture, his oncologist recommended he stay off his leg.
I’m not an orthopedic specialist. But if I were this patient, I would seek a second opinion to find out specifically what I can and shouldn’t do. Is walking OK? How about a non-weight bearing exercise like swimming?
Here’s the thing: That hole in his leg isn’t going to go away anytime soon because it is not like a broken bone which heals in six weeks. Yes, as his myeloma is hopefully brought under control, the lesion should start to shrink. But rarely do these “holes” fill in completely, even with the use of bisphosphonates.
I’m sure you already know this but as soon as you stop exercising, you open yourself up to all kinds of possible short-term and long-term medical complications, such as blood clots, obesity, diabetes, and high blood pressure.
So at what point will it be safe to resume activities?
My doctors told me not to lift anything heavy. I had so many “holes in my bones” when I was diagnosed, they told me not to do lots of things. No one ever said it was OK for me to start exercising again. I slowly and carefully started doing that on my own.
Almost four years later, if you were to see one of my MRIs, very little has changed. The same holes are still there. But I exercise at least one hour each and every day. I walk, swim, do push-ups, lift light dumbbells, and walk stairs. I was a ski instructor, but now I don’t ski—even though I’m sure it would be OK if I were careful. I don’t run anymore. It hurts! But if I were passionate enough about it, I’m sure I could.
The bottom line: You need to push yourself and stay active. This is best done under professional supervision from a physical therapist and/or orthopedist. But if you want to stay strong and healthy enough to beat the multiple myeloma life expectancy numbers and withstand the onslaught of chemo and stem cell transplants, you need to keep moving!
Don’t argue with me! Bundle up and go for a walk—it’s a beautiful day. Or use a tread mill. Ride an exercycle. Go swimming. Get moving!
My wife and I took this so seriously we moved to Florida so I didn’t have to worry about slipping on the ice or deal with the cold weather, which made all of my holes feel like excruciatingly painful loose fillings in a tooth—except all over my body!
So commit to exercising daily. It will help you feel good and keep smiling! Pat
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Yes, yes, yes! We have no restrictions. None. And yet our problem is Dave's fatigue. He works beyond a 40 hour week so its hard for me to be brutal about it, so I resort to female wiles and disguise the exercise as best I can. "Hey honey, its going to get hot today, let's get out for a bike ride up to the coffee shop or a walk and take Kip?" It works pretty much all the time. But that can really only be accomplished on the weekend.
I did have a friend's daughter staying with us over the summer, who is a Yoga Instructor. Instead of letting her pay me rent, I asked her to work with Dave instead. She loved it so much she is considering getting into therapeutic Yoga and PT. It did WONDERS for Dave. Its strengthening, but not jarring, it really works on balance and flexibility, which the over 50 crowd need as well. It was marvelous. He noticed after two weeks that he was no longer getting muscle spasms in the middle of his back during the long work days. He was sleeping better and his stamina improved.
So think about the Yoga too! Its a great option.
And as a caregiver, I need to get off my duff as well! I got way to used to sitting, sitting, sitting.
Thanks for sharing, Lori! I forgot to mention I understand how difficult it is to exercise when you are tired. I remember falling asleep on the weight bench and having Pattie wake me up several times when I was undergoing radiation therapy and I was all drugged-up.
All we can do is try! Pat
That is too funny Pat! When I was getting really frustrated, I remembered how much I valued other MM patients who really helped me to understand how profound the fatigue was. It helped me to relax and be more understanding. Of course it didn't help when I heard that one transplant patient was walking the 7 flights of stairs up to the center everyday! You have to keep a certain sense of humor about it all, while not making light of the importance of doing what you can to keep your physical health from deteriorating completely. It doesn't seem to take long.
It is especially hard to keep moving during these cold winter months. Thanks for the reminder!
You are all right about this. I have to be more consistent in my workouts, and Pat, summer in Canada makes it much easier. But I do have a treadmill and I used to have a rule that if I wanted to watch TV, I would ONLY watch certain shows while working out. Usually that meant treadmill and bike.
I think what happens to me is that I still seem to have some back pain where an old lesion used to be. Lori, I also find that my energy level is very low. Sometimes it's hard to push myself.
Yoga is amazing, and I've switched to Yoga in lieu of running my 3 miles in 30 minutes.
Lets all remember that Don runs marathons, and check out this inspiring article about Craig Finkbeiner doing an ironman! http://goo.gl/CfVNO
Lori and Pat, I'm hoping we can also get back to the Revlimid as maintenance discussion. 4 years for you, 2 for me. Are we doing the right thing based on your further analysis of the meetings?
Too cold up north in the winter and too hot down south in the summer. Always an excuse, right? I've never tried yoga. Sounds like I should! Pat
Water aerobics -- I've been going for 16 years (way before MM) and continue for the stretching yoga positions in water, the cardio exercises, the great muscle toning with weights under blue skies in a heated pool. Yes, I live in south Florida, but even on cold days the class meets (60 degrees). On colder days I power walk the park at sunrise. Fortunately, I've had no bone involvement.
Exercise makes you feel just alive! Suzanne
Excellent, excellent suggestion! I'm close to finishing a book about nutrition and exercise suggestions for cancer patients and I didn't include water aerobics or resistance as a suggestion. Now I will! Pat
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