Myeloma Mom: Playing The Numbers Game
For my birthday a few months ago, my husband got me a Fitbit. I’m obsessed with it.
A Fitbit is a small device you wear inside a band that goes around your wrist. It has magical powers and can tell when you’re walking or running, and it tracks your activity throughout the day. The goal is to take at least 10,000 steps every day.
Once you hit 10,000 steps, the Fitbit lights up and buzzes happily. When you sync your device to the Fitbit web site after hitting 10,000 steps, you’re rewarded with a big happy face with a cartoon-like speech balloon that says, “Hooray!”
“Hooray!” is only for 10,000-step winners. Not lazy, 9,999-step losers.
I got the Fitbit in April, and it recently sent me an e-mail alert that I’ve walked/run a total of 750 miles, which is the length of California. Score! Or as Sir Happy Face would tell me, “Hooray!”
Why am I able to walk this far? Partly because I like to run and exercise anyway. Partly because I have a child who doesn’t like to go to bed and requests that I go up and down the stairs many times between 8 p.m. and 10 p.m. because she “heard a sound that sounds like there’s a bird in the closet.”
There is never a bird in the closet. But at least I’m earning steps.
But I think the main reason I walk so far is because I simply cannot bear to not hit 10,000 steps by the end of the day. Just last night, I was about to climb into bed and saw my Fitbit was only showing 9,940 steps.
Oh, that wasn’t going to work.
I went downstairs and walked around and around the kitchen island until I got in my remaining 60 steps. We have a pretty small kitchen island, so I was dizzy, but satisfied. And I knew this was not rational behavior, but I didn’t really care.
And I wonder: Would I have this obsession with hitting the “right” number if it weren’t for myeloma?
Before my myeloma diagnosis, I was not a “numbers person.”
I suffered through four years of high school math and managed to graduate from college with just one algebra class. It’s not that I was necessarily “bad” at math; I usually understood most of it and got halfway decent grades. I just found it boring. I didn’t care about numbers.
I was an English major. I preferred words. Numbers are simply black and white, I thought. They carry no meaning or emotion.
At least that’s what I thought until my diagnosis. Then I found out how much emotion a simple number can have. With myeloma, one number can make me rejoice or cry or worry for a month straight.
You’d think that after nearly nine years of this, I’d be an old pro. You’d think I’d no longer worry about getting my test results. Not so. Every month when the nurse calls me with my results, I hold my breath while I wait for her to reveal the magic number.
My M-spike has been mostly stable for the past several years. Every now and then, it will creep up or down slightly. When it creeps down, I rejoice. I’m the big happy face shouting, “Hooray!”
When it creeps up, I’m shaky with fear, wondering if this is the beginning of a trend. All I can do is wait out the next four weeks, hoping it will go back down. I can’t just do laps around the kitchen island to make things better.
Maybe that’s why I like the Fitbit. I get to see numbers that affect my health, but I’m able to control them somewhat. I can take action to get them into the healthy range. With myeloma, there is no immediate control over the numbers.
For several years, when the nurse would call me with my test results, I would request that she’d mail a copy of everything to my home. A few days later, I’d sit down at the kitchen table with the complete set of results and study each and every number. Even though most of them would be within normal range, I would still look closely at everything, wondering why something had gone up 0.1 or down 0.2.
After a while, I stopped asking for the copy to be sent to me. Even though I’m a big believer in knowing all there is to know about my disease, I knew I needed to stop obsessing so much over each and every number. Now I simply ask the nurse to let me know if any numbers are out of the normal range, and I leave it at that.
I’m attempting to let go of the hold that the numbers have on me, but I know I’ll never have complete success with that. If you need me, I’ll be walking laps around my kitchen island.
Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi Karen,
I am also a 9 year multiple myeloma survivor. I can relate to what you were saying. The numbers can make you whacko crazy. I have had blood tests every 3 months for the last 9 years. I really started to worry about two months ago. I hope this puts a hold on the levels ... staying healthy is the key.
I liked your article and writing. Have a good night.
Long time survivor Mark
We walk everyday. Actually, we are on day 430 days of walking. No breaks, everyday. BUT, THEN I GOT MY HUSBAND THE FITBIT. OMG , he has not stopped. On a weekend he will do 8- 9 miles around our propery. The Fitbit is evil ... Ha ha, just kidding. I can't do it, but he can so ...
I'm glad the Fitbit is working for you. Somehow, I can't get past the 2 mile mark in the morning, but, hey, at least I'm walking.
Well done Karen.
I had a stem cell transplant 4 years ago and was exhausted even if I walked 100 yards. I bought myself a pedometer. It's like your gadget, but gives not only steps but yards, miles and time. For the past 3 years I have managed at least 3 miles a day or a good 1 hour walk. As a result I have to date always passed my 3 monthly blood tests and I feel good.
I also sleep better and eat well and I get my quota of essential vitamin D for my bones and a bit of blue sky keeps depression at bay. When you're out and about meeting people you forget that you are living with myeloma.
Every one should have a Fitbit. It's a great motivator and it sure keeps you fit, I've gone past the 10 mile mark a few times with no lasting effects, not bad for an "old lad " pushing 74.
After all, "life is for living". And I would prefer to wear out than rust up. I find walking is best for your bones.
Hi Karen, that is a neat gadget that gives you your 'mileage' as you go through your busy day! I am sure it must be encouraging to get an email telling you when you have reached a certain distance. Good for you!
Years ago I clocked certain routes near my house using the car. So I know what are 3 km, 4 km, 5 km routes for walking (I did this measuring when I was training for road races). Then I write down how far I went every day in my journal. But I like your idea, since it would also include all the daily walking that we do without even thinking about it!
Almost 9 years ago at a patient seminar my husband had the opportunity to ask Dr. Greg Mundy what was the best thing he could do to maintain bone health. His very straightforward answer was to walk ... weight bearing exercise. It became as important to us as Revlimid. Fitbit is fantastic. And Karen your sense of humor always entertains. All the best to you!
Great article Karen. I really appreciate the humor.
Here's my version of the numbers game. I travel a long way to see my doc, so my meetings with him happen on the same day as my blood draws. The only numbers we have to discuss are from 2 months previous. I return home and know that he will call me if there are concerns with the current labs. So I spend the next week dreading every cell call that comes in. If I haven't heard from him after a week I know there aren't serious problems so I call his office and have the staff send me the lab results.
But I don't actually look at them because I don't want to know if kappa light chains are up a bit or rbc's or wbc's or hemoglobin are down. Finally, right before my next appointment 2 months later, I'll look at the labs so I can discuss them with the doc. If it turns out that they were very good, I'm annoyed because I could have spent 2 months basking in them.
Haha, and I spent my career as a scientist making a living dealing with objective reality. Apparently myeloma has converted me to some sort of voodoo belief system.
My goodness, Karen - you could have been writing about me! Glad I'm not the only one. Alice x
Karen-
What a wonderful article about your FitBit and your obsession with numbers. I have to look at my results every month and even look at the graph that I can generate through the online program that the hospital uses for posting results. Every time there is an uptick of the m-spike I have to remind myself that the 0.1 change isn't meaningful unless there is a trend that develops in the upward direction. Usually the next batch of results shows that there is a 0.1 downtick. Fortunately my oncologist has given me a bench mark of when we would change my treatment regimen.
I may have to get a Fitbit to maybe encourage me to get in more walking per day. I must admit that I am lagging in that arena. But, I don't have young children who force you into it whether you want to or not.
I love your humor and ability to notice the things that you are doing that don't make any real sense, but you do them anyway - walking laps around your kitchen to reach your 10,000 step goal for the day.
Keep smiling, walking and laughing,
Nancy in Phila
Karen
I am a professional engineer, so the lab numbers I get each month are plugged into a spreadsheet for further analysis. Numbers tell us a lot. They may be in the normal range, but are they forming an increasing or decreasing trend? From the trends that I developed, I could predict pretty accurately what my blood numbers would be during my weekly Velcade treatments. The pattern was very repeatable, with each week of rest per month being the start of a new cycle.
I think being an engineer with a love for statistics and numbers is genetic. Even the medical staff would ask the question "are you an engineer" when I would ask them for the printout of the most recent lab results.
You have moved your focus to 10,000 steps to fitness, which is great also. I have also done that using a belt mounted counter. Keeping fit is very important for us MM'ers. Keep walking and pursuing the best level of health you can achieve.
Karen
There is a problem with FitBit and similar devices. They are not secure. See the following article:
http://linustechtips.com/main/topic/191694-its-easy-to-track-fitness-devices-we-are-shocked-by-this/
It is possible for an unscrupulous person to access sensitive records on your phone via blue tooth from identifiers broadcast by the fitness device
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