I lived an active life, well active enough for a desk-bound person! I have a list as long as my arm of the stuff I used to do when I was able. I taught aerobics and weightlifting; I was a firefighter and carried gear well over 100 pounds on my back; I earned belts in karate; I trained for bike treks and rode my bike almost 18 miles daily; I was able to sing in a choir; I created gardens and joyful spaces; I raised a family; I trained dogs; I drove a car and hiked; I enjoyed cooking large family meals; I was at one time – more.
I was strong – I could walk for miles without concern. I didn’t fall or do anything strenuous, so it came as a surprise when I was told I had several broken bones and compressions in my spine.
Not to say I am less now (although I am 6” shorter) but I am certainly different. When I was diagnosed with multiple myeloma in 2015, I was in the middle of an exercise challenge of stair climbing. I worked on the 10th floor of a high-rise building and the challenge was to use the stairs daily instead of the elevator. I was using the stairs both ways and then one day I was having trouble going down so I would only walk up and use the elevator to go down. Then I could no longer bend my knees to use the stairs even one time a day safely and had to leave the challenge. I was heartbroken – I had done this challenge so many other times and I felt like I failed.
The cancer diagnosis was a blow to my soul but the damage done to my bones by cancer threw me off my game. After weeks of testing, they found my spine took the brunt of the damage. Not only did I have arthritis in most of my body, but my spine was also fractured and damaged beyond repair. At least now I had some answers as to why I was in so much pain and at times unable to stand or walk.
They were able to place rods and pins in my spine for stability which helped the four fractures in my lumbar region, but the remaining fifteen (15) compressed vertebra were beyond repair. That is half the spine compressed and out of commission. I was sent home with one rule – no lifting more than 15 pounds. I was warned to contact them if I had ANY pain beyond what I was experiencing at that time, which was already a 10/10.
The first 3 years I was adjusting. I had 2 spinal operations and my cancer treatment was taking a toll on my spirit and body. I was tired all the time, I hurt all the time, a simple coughing spell would crack a rib or two, I had trouble ‘seeing’ myself on the other side of this. I knew I had to keep moving as much as I could, but the pain was so debilitating.
It was at year 3 when I came to the realization this was my new normal. I had to find something that got me moving again. That’s the first time I pulled out my tap shoes. My office chair sat on a plastic mat and made the perfect sound effect. I sat and tapped to my favorite music. I was making noise!
It was around year 4 when I purchased a device to wear on my wrist to keep track of my movements and my heart and it also served as safety should I have a fall. I felt like I could move a bit more without fear of falling and not being able to get help. So, I put my new device to work.
I set up challenges for myself to just walk around the house. Up and down the stairs and in my yard. Places where I knew I was safe, and I knew every dip or turn. I found I was more able in the morning hours and my pain levels were more stable, so I used that time of the day to chart most of my activity.
Walking around the house and yard yielded me on average 3000 steps a day. While- for the more abled that is a short jaunt – for me, it was a marathon. It was Mary’s Marathon. The device kept me honest and on track. On the days when I did less, I was able to give a report back to my team as to how I felt and what new pain I was experiencing.
By year 5 I decided it was time to up my game and get back my groove. I signed up for a 5k virtual walk to raise money for multiple myeloma. I knew I did not and could not walk and train on my own – it was too risky to go around the block alone, so I solicited friends as walking buddies. Eventually, I was able to walk 1-3 miles a day around my block. The neighbors would come out and wave me on and were happy to see me outside my home after so many years. I was FREE!!! I trained for one month and was able to get my daily steps up to 10,000 a day. The day of the walk came, and it was probably the most miserable day we could have in the Pacific Northwest with rain, sleet, hail, and wind. Since the walk was virtual, I started the initial journey inside my house, taking the stairs more than usual, and then when there was a break in the weather, I took it outside around the block. The final push to get to my goal was met with more wind and rain. My family joined me as I walked (with umbrellas) to reach my goal. I did it!!! I felt so proud and hopeful. Not something one feels often with a diagnosis of myeloma.
So now what? You would think I would not stop walking the block after this feat, but I lost my walking buddies. It happens. I just needed to re-invent myself and my routine once again. I knew now what my limits were and what my best and worst times of the day were. I just had to ‘fit’ something into my life that worked around this routine.
An ad came over my social media for virtual tap dance classes. I was hooked and I already had the equipment. The ‘class kit’ came with a portable mat, discs, a connection via the computer, and slip-on tap shoes. I started slow, sitting at first and taking each class for 2 weeks so I knew I was stable. By the third week, I was able to stand and hold onto the desk and follow the routines. I was moving – I was making a joyful noise! Even my dogs were into the classes. Every time I took out the mat and put on my shoes my dogs would see that as their cue to bring their toys into the office where I was ‘taking class’. They would sit and play with their toys while I took the class.
I don’t tap every day. The reality is I am not able to move the same day today. Some days I find myself sleeping more than most and other days I am more able to be up and moving about. I just need to listen to my body and respect what it is trying to tell me.
I still have daily pain and can feel every compression and fracture and sometimes I have new ones. I try to be smart about my activity and my abilities. No, I can’t lift even a bag of dirt, but I can take 15 minutes and weed a small area of my garden, or maybe I can vacuum a couple of rooms and I learned to push the laundry basket to the washer, so I don’t lift it (there are ways around most activities).
There are some real dark days where you just feel like the story is falling apart. Just keep moving, even when you are bluffing, even when you don't quite know what is going to happen next.
Over the past 6 years, I have seen a change in my body due to what this cancer has gifted me – and yes, I did mean ‘gifted’. My cancer has given me permission to ‘LIVE OUT LOUD’ and make some noise. All-be-it slowly – I just keep moving.
Mary Sage lives with her husband, son, and 2 dogs in the Pacific Northwest region. She was diagnosed with Stage 2 IgG Lambda in November 2015 and placed on immediate disability due to several spinal fractures, severe pain, and limited mobility. Like many others, prior to diagnosis, she experienced years of bizarre blood results and chronic back pain that was becoming increasingly debilitating. Mary had a stem cell harvest in 2016 and a stem cell transplant in 2019.
Mary is a volunteer Myeloma Coach. She shares her time and personal experience with myeloma to help others. Myeloma Coaches are asked to volunteer eight hours a month for up to one year. Initial, ongoing training, support, and education are provided to all Coaches. If you are living with or caring for someone with myeloma, consider becoming a Myeloma Coach. Your experience and knowledge of resources can make a difference in another's life.
about the author
Rozalynn Hite is the Myeloma Coach Director and wife of myeloma patient Richard Hite. Rozalynn is an occupational therapist and mother of three beautiful children.