Northern Lights: Returning To Exercise
This summer was an unusual one here in Calgary. In June, after weeks of rain, a severe flood devastated parts of our city. The bike and pedestrian pathways and bridges that are heavily used along our river banks were partially washed out. The system was closed for awhile, until assessments and initial repairs could be made.
This impacted most of us here. I use the pathway system quite a lot, either on foot or by bicycle. I was relieved when later this summer we were able to get out along the rivers again, for that is a big part of the outdoor exercise program I have set for myself.
After my awful fall in 2009, which lead to my myeloma diagnosis, I wasn’t up to much of any movement. Collapsed vertebrae caused so much pain that even hobbling around the house was a major effort for me.
Today, four years later, I can walk long distances and cycle up to 35 kilometers (22 miles) again. It is a miracle to me, since in the summer of 2009 I thought I was becoming permanently disabled.
I think that the treatments with bisphosphonates, along with the treatments that halted my myeloma and put me into a remission, helped me to get back on my feet again. I took them for almost three years. At first, I received an infusion of the bisphosphonate Aredia (pamidronate) once a month. The dose was subsequently lowered to once every two months and then to once every three months. My oncologist discontinued my treatments a year ago, since I am quite well again. In addition, he did not want to unnecessarily expose me to the risk of getting osteonecrosis of the jaw, a side effect of bisphosphonates.
Getting to where I am now was a gradual process.
There would not have been any value in me taking a walking stick and hiking 10 kilometers (6 miles) or pedaling away on my bike on the pathways right away. I needed to feel comfortable that it was more or less safe to do those activities, and it took at least two years for me to feel that way.
At first I started walking around my neighborhood, still using a walker for stability. I was literally terrified of falling, since a fall was the cause of my fractured vertebrae. My bones were so weak at that time that I was jumpy about doing anything that might cause more fractures.
I am fortunate to have a membership at a good fitness club, but it took me months to get back to the gym after my initial diagnosis. I first started using a stationary bike. I also gradually got back into the swimming pool at the gym and did some aquatic exercises. Later I took an aquasize class and eventually tried some gentle yoga.
To my relief, none of these activities caused more injuries. In fact, I haven’t had any more fractures since the initial ones, although I have had a lot of pain at times, especially in the lower back and hip areas. I still am especially careful about lifting heavy objects, since that is very painful.
In the meantime, I also started walking outdoors along the river. Over time, I increased the distance I walked to about 3 kilometers (2 miles) a day.
After I fell hard on the icy sidewalks twice in the wintertime and was able to get up and brush the snow off my coat without sustaining injuries, I knew I was definitely a lot stronger than before. When I crashed down hard on lava rock while snorkeling earlier this year and sustained the largest bruise I have ever had, but wasn’t seriously injured, it also made me realize that I must be a lot better now. So although of course I try not to fall or get injured, every day life does sometimes have hazards, and it is nice to know that I have survived a few accidents without further injury.
In the last year, a little puppy has come into my life that belongs to one of my daughters and her husband. Since they both work full time, I have offered to take the puppy for walks during the day. Since dogs are definitely always interested in going for a walk, I am up to walking about 6 kilometers (4 miles) some days now. I have the little dog to thank for that.
Last winter we tried snowshoeing again. Since I am still fearful of falling, it seemed reasonable to switch from skis to snowshoes. That worked fine, although I saw some people out for walks going faster than me. I guess we need to find some snowier trails this winter. I haven’t been back on my downhill skis or skates since the injuries, and it doesn’t seem likely that I will be either, although maybe cross country skiing would be okay.
My bicycle is a different matter though. Since, like many, I learned to ride a bike as a child and had been riding all my life, it was something I missed terribly when I was sidelined by myeloma. I can’t tell you how I would dream of biking, skiing, and skating when I was going through treatment. I am sure that this may seem trivial to most, but I so missed my outdoor activities.
I gradually got back on the bike again. As I mentioned earlier, I started out on a stationary bike. Last year, I started taking some rides along the river banks on my mountain bike. This year, I got back on my cherished light-weight road bike. I was thrilled to find that I can now do a 35-kilometer (22-mile) ride along the river pathways. I am still not cycling up steep hills or using ‘clip-on’ shoes. The gentle ride along the river is enough for me.
I am still trying gentle yoga, but as with other exercise classes, it seems easier to use a DVD at home for that rather than go to a class. Maybe I will graduate into going to yoga classes this winter, since I have enjoyed the drop-in classes I have taken so far.
My favorite exercise in the summer is to go on a mountain hike, and so far this year, I have been on several of those. The beautiful surroundings are salve for the soul!
Compared to my previous self, I am not as strong and as quick on my feet and I do not have as much endurance as I did a decade ago. But that’s okay. I think we all expect to lose a bit of strength and endurance every decade. But to lose almost all of my strength and then have a lot of it built back again, that is modern medicine at its best. And I think my determination to get better again has contributed to it, too.
Have any of you returned to your previous exercise routine after being diagnosed with myeloma?
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The quotation for this month is from Zhuangzi (369 B.C. - 286 B.C.), a Chinese philosopher, who wrote "I know the joy of fishes in the river through my own joy, as I go walking along the same river."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Hi Nancy,
Thank you for your story. I can completely relate. At the time of diagnosis and during my initial treatment I had a real fear of not being able to do any of my favourite activities again. I was always very active but my back was so bad that I could barely walk 100 metres. Now I do everything I used to do with the exception of contact sports.
I think the pamidronate helped a bit (I had to stop due to osteonecrosis of the jaw) and the treatment certainly helped. For me the true "silver bullet" was a vertebroplasty on 2 of my vertebrae. I noticed a difference immediately and stopped taking any pain medication within a few weeks.
I now ski, play tennis, swim, hike, etc. I am not as strong as I was and I do have some pain - especially when there is jarring on the back (I tried water skiing but that was a bit too much banging). Thinking back to 2006 when I could hardly walk and had a handicapped parking pass, I am amazed how "normal" things are now.
As a friend of mine always reminds me "motion is lotion". Keep on moving!
Michael
Thanks for sharing your experiences too, Michael. Glad to know that the vertebroplasty helped, but too bad you did have to suffer from ONJ. I have a handicapped parking pass too...they last for five years, but fortunately it is gathering dust now!
Can't imagine water skiing!! I did that as a teen but was never very good at that (kept sinking actually). Happy to be doing the activities I can, again. I appreciate them all the more after having been sidelined for awhile.
Nancy,
I was fortunate enough to not have any compressed vertebrae expect for one from an old injury years ago. I was too fatigued to ride my road bike (Cannodale Synapse Carbon) while on Velcade but started riding again shorty after my SCT. MY GF is a 9 time Ironman Finisher and knows what suffering is, she did not want any excuses and pushed me to get back outside and doing physical activity. Within about 4 months of the SCT I found myself riding significantly better than I had ever had before. I believe that for several years before I was diagnosed and treated for multiple myeloma I likely had the disease at some level that was making me anemic and affecting my cycling performance. I had felt like I was hitting a barrier that I could not get through, it was difficult to ride 30 miles and I would have to frequently stop when climbing. Post SCT within a few months 30 miles was a short ride and I was typically riding 40 to 70 miles and could climb many hills that I was stopping on before. I did my first 100 mile century ride about 16 months after the SCT, something I had thought I might never had been able to do before. I also still swim, ski, and just in the last two few months returned to SCUBA diving.
Wow Eric! You are certainly very fit. It's partly because of all the inspiring accounts that I have read from people like yourself on the Beacon that I even felt confident to try biking longer distances again. My husband is very supportive and rides with me. i also know that I had slowed down quite a bit leading up to my dx. i wasn't really anemic but had a lot of issues...sure felt a lot better after treatments.
My son-in-law did an Ironman this summer in Coeur d'Alene...he trained a lot for it and seemed to enjoy doing that. Nice that your girl friend is so fit also...I am sure that must be a lot of help for you too! Did you know that last weekend there was a cycling event here such as the Tour de France...the 'Tour of Alberta'. Some of the top cyclists in the world were here competing. We went biking to downtown and watched the finishing laps...there was a real break away group at the front and a neat pellaton too!! That was also inspiring to my family. A young man who grew up in our neighbourhood was one of the competitors. Because of the flooding here, one section, through the mountains, had to be rerouted since that road has not yet been reopened.
I am a cyclist as well, although my myeloma was caught early before I had any bone damage. I got neuropathy in my feet from the Velcade, so that makes riding a bit painful at times. The clipless pedals help in my case as the stiff soles tend to spread the load out over a larger area of my feet. Walking my two dogs is way too painful. They want to go much faster than me and I worry that a 65lb Flat Coated Retriever and a 90lb German Shepherd will pull me over.
Something in the back of my mind is that if/when the cancer progresses, if I don't feel safe riding my road bikes any more, I may switch to a 3 wheel recumbent. Hard to fall off one of those! I ride about 23 miles a day, 3-5 days a week. I used to ride 5-7 days a week, with longer rides of 30-45 miles thrown in on weekends. I can still do 30 miles, just not until summer is over. It is way too hot down here in Florida after 10am!
Hi Timm, Thanks for sharing. I am not using 'clipless pedals' (that's when you clip your shoes in?) because I am still nervous about falling over on my bike. Really am not a top athlete such as some who are posting in but just cycling for enjoyment...the pathways here are good though...they stretch out for hundreds of kms here. Sorry to hear about the neuropathy in your feet...good idea to have a plan for future biking if you don't feel up to riding your road bike anymore.
My little 'grandpuppy' is small enough for me to handle on my own. I couldn't walk really large dogs either, for am not strong enough any more for that. I can't even lift him for he weighs 35 lb., which is over my limit! He has learned to jump up into his car crate on his own, with just a little boost from me.
Early morning is a good time for exercising isn't it? Not only is the weather cooler, but one seems to have more energy first thing in the morning.
Early morning is nice here, but it doesn't take long for the temps to climb into the 80's, when I start to melt! If I don't get out of the house by 8am, it is too late for me to go as it takes a couple of hours for me to do my normal ride. We have a 46 mile long trail a mile from the house. I wouldn't ride any great distances around here without the trail as it is just too dangerous. Two lane roads with no shoulder inhabited by senior citizens in Crown Vics. We have a lot of accidents where the driver "just didn't see the other car". Can you imagine how invisible a bike would be!
I have only visited places where it doesn't freeze in winter, never lived there, so sometimes I can't quite visualize the climate....I also like the pathways. I really don't want to compete with cars on narrow bike lanes either. Bike commuters do that all the time of course...it's neat to see the gear they have..so many reflective stripes on their clothing, lights etc.
Exercise is good for the soul as well as the body. Cylcing in Texas in the summer is a matter of getting aclimated to the heat. I did the Hotter n Hell 100 when is was cool this year - only 97. The climate in the summer here - low in the upper 70s and highs in the upper 90s to low 100s. But you get used to it. I have logged in just over 4,000 miles this year on my bike. Will be racing next weekend in a 3 man 24 hour time trial. My share will be about 120 miles.
Ron
That's great Ron! Best of luck in your races and time trials ... I am sure that hydration must be really important for your climate and also because you are working so intensely with your cycling! You most likely use those 'sports drinks' or 'gels' for runners and cyclists also?
Nancy,
I am aware of the Tour of Alberta but it is not televised in my area. One of my favorite riders Peter Sagan from team Cannondale was riding in that tour and he won a couple of stages. I believe this was the first year of the race, I hope the Tour was a success. A lot of riders did that Tour to get ready for Worlds in Italy coming up soon.
I have not been riding too much lately though, it has been real hot in my area and I find it hard to ride if the temp is above the low 90s. I have been caught our riding when it was 103, I do not know how Ron does it in Texas, the heat sucks the life out of me.
As number of people mentioned that they have had trouble cycling and doing other activities because of neuropathy pain. I had bad neuropathy pain to but it seemed to have affected me differently. I found that walking, swimming or riding my bike on stationary trainer helped relieve the pain but rough surfaces where and still are really painful to walk on bare foot. I had what would probably be considered to be restless leg syndrome. I would find myself constantly shuffling my feet and it would be difficult to stand for very long periods without pacing or shuffling back and forth. It made people feel uncomfortable around me.
Eric, the Tour of Alberta was televised on TSN (the sports network). Peter Sagan won three stages, including the fifth (last stage). The winner was Australian Rohan Denis, aged 23. The runner-up was an American, Brent Bookwaller. The race was the first of its kind in Canada and I think that there is secure funding for two more years. Good to know that you were aware of it too! To me, that makes it kind of amazing that a lad who grew up in our community, Nick Hamilton, was competing in it! We saw him after the race, and he looked really exhausted, not surprisingly.
Since I live in a cool climate, i don't do exercising in the heat very well either. We always have a cool breeze here, which is refreshing! Hope your neuropathy is manageable...sounds like you do work around it quite well. Other people writing have mentioned that swimming really helps with that. i can feel the neuropathy in my feet but I must have been really lucky not to have it be painful actually.
My husband has neuropathy in his feet from taking Velcade and is worried about driving again. Have any of you had any problem driving with neuropathy?
Hi Suzanne, I haven't had that problem, although I didn't drive for a few months when i was going thru intense treatments, and had a central venous line! But the best thing to do is to take this query and post it as a 'forum' item. Probably lots of people have had this issue too, and can advise you from there!
Thanks Jan. It seems we do gravitate to exercises that are 'low impact' over time, even without having to consider the difficulties of MM. Hope you didn't also have a lot of bone damage though. I often visit the Pacific Northwest also, although much further north..the North Island as the area from Comox/Courtenay on Vancouver Is. is referred to. Both my sisters and their families and my Mom live there. when it snows there, that is a major event, since the snow falling on cedar forests contains more moisture than what falls here in the rain shadow of the Rockies! A neat mountain in that area is Mt. Washington..there is a provincial park nearby, Strathcona Park...nice boardwalks in there actually and a network of mountain trails. Something there for all abilities of hikers. Enjoy your mushroom soup! I visited the Oregon coast as a child...it was awesome! I think maybe that the Cdn. equivalent is the Pacific Rim Nat'l Park.
Thank you Nancy for another eloquent column. Yes, cycling, swimming and walking are the best low impact exercises, which most of us MM patients can tolerate. In the winter here in the Pacific NW, snowshoeing slowly, with poles, is great! I can also downhill ski the groomers without problems. Now in the fall season, chanterelle mushroom picking here is wonderful, and good exercise! I also cannot do hills any more, but I still enjoy outdoor exercise on flat land.
Low impact aerobic exercise, stretching and strengthening as tolerated are all important, especially with building up core strength. For me, exercising the mind intellectually, creatively and intuitively needs to be emphasized just as much. It is all a part of embracing health holistically, which makes a big difference in our ability to tolerate the various MM treatments we are all exposed to. Keep on keeping on! Jan