Myeloma, Party Of Two: Piecing Together Myeloma

If you were to walk through my kitchen, you’d see myriad white ironstone platters and pitchers atop honey-colored cabinets. You’d probably also spy a golden tabby smugly perched on the stone countertop. And, most days, you’d find a jigsaw puzzle on my kitchen table.
I like jigsaw puzzles. I’ve been putting them together for years. I like the process of sorting out the border pieces and piling like colors, patterns, and shapes. I take satisfaction in finding bridge pieces that connect large sections together. I enjoy the zen-like practice of searching, finding, placing, and beholding the completed result. With puzzles, I escape and go to a place where the pieces always fit and the picture always becomes clear.
It’s probably not surprising that I value order. If in doubt, you could ask my husband, who, after a decade of marriage, has accepted that laundry should be pre-sorted in dedicated hampers, cleaners ought to be arranged according to height and nozzle, and warm neutrals make a room look “clean.”
I also value cohesion. I like that puzzles are comprised of singular pieces that produce something extraordinary when they are put together. Sometimes, I think of myself like that too. While I can do meaningful things on my own, I’ve always felt a sense of “interconnectedness” with those around me that, for me, allowed for more complete, robust experiences in life. With my husband, for example, I’ve found the meaning behind all the poetry that I read in school.
Armed with these idiosyncrasies (and many more), I recently purchased a new puzzle. It depicts a Norman Rockwell scene called “Roadblock.” It shows a red delivery truck wedged in an early 20th-century alleyway. The truck is flanked by tenement buildings, with people leaning out their windows, straining to look at the odd site as though it were prime time television. I liked the nostalgic scene, dripping with the essence of “Americana,” and I was anxious to get started on the puzzle.
Within an hour of opening it, my enthusiasm soured.
Good puzzles have predictable, interlocking, clean-shaped pieces. Unfortunately, this was not a good puzzle.
The pieces were oddly cut and aligned in a random fashion. It took twice as long to pair complementary angles or locate specific pieces, because the puzzle shapes didn’t connect in a way that made sense.
Last night I was struggling with the puzzle, and it hit me how familiar the process was.
It reminds me of multiple myeloma. Like my puzzle, multiple myeloma seems random and unpredictable. We don’t know why some people develop myeloma and others do not. While it primarily affects older people, my husband was diagnosed in his late thirties.
It is a cancer that varies greatly from person to person, both in its symptomology and manifestation, as well as with its response to treatment. Some patients develop bone lesions, while others do not. Some patients suffer from significant kidney problems, while others don’t. Some patients achieve complete responses to their stem cell transplants, while others don’t. Even the definition of ‘who has myeloma’ has changed, with some smoldering multiple myeloma patients now being considered for active treatment rather than watchful waiting protocols.
It’s been three years since myeloma entered my world, and despite a growing familiarity with terminology, testing, treatments, and disease progression, I feel as though I’m trying to assemble a puzzle whose picture I can’t make out. And I suspect that this is a common feeling among those impacted by this disease.
It’s ironic that the name of my newest puzzle is “Roadblock,” given that multiple myeloma has a way of inserting itself into the thoughts of even the most well-adjusted, tenured patients. I see my husband napping, and I wonder if his anemia is getting worse. When a friend tells us about getting over a cold or infection, I’m thinking about my husband’s decreasing blood cell count. I try to beat him to the trunk to carry in the 40-pound sack of cat food, because I’m mindful of bone fractures.
Despite what it may sound like, I don’t think about myeloma every day. I learned a couple of years back that this disease will drive you crazy if you let it, so I try not to venture down unproductive roads. Multiple myeloma just has a way of creeping into your thoughts, and, if you’re not careful, it will wedge itself in there like Norman Rockwall’s truck in the alley.
This highly individualized disease, with its unpredictable behaviors and open-ended questions, leaves us all searching for the big picture, and that is what I suspect makes it so tough. Whether you’re planning your summer vacation or making serious decisions about the future, myeloma shapes those thoughts for us all.
Like a puzzle without all its pieces, I wonder what is lacking from myeloma research, and how long it will take to find a cure. I hope that this missing piece is found soon.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here.
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This is a terrific column, Tabitha. The puzzles we are now faced with will keep us busy learning about the complexities of MM for many years, I am sure. I hope that Daniel is doing well!
When you mentioned the heavy bag of cat food, it reminded me of those heavy bags of dog food, which are almost impossible to lug around. They are heavy and awkward. I just ask the store clerk to lift the bag into my vehicle, and then, at home, we do have a folding trolley. It is portable and you can use it to wheel heavy items around with, and it comes in handy sometimes.
Nice article that have wrote, Tabitha.
As the mm'er in my home, I catch my wife trying to make sure I ain't lifting heavy things also. What a mix of emotions it causes. I have a feeling of being watched over (as a man). My wife tries to do the things I'm supposed to do. It causes both good and sad feelings in me.
One, I know she will do anything for me. Two, that she has to is hard to take.
But I will finish by saying your husband is a lucky man, as am I.
God bless all of our caregivers,
marv
Tabitha
I bought my self a blood saturation meter, the type the nurses use that snap on your finger and measure Oxygen saturation and pulse. This meter is terrific because it gives me a direct indication of how my red blood cell count is doing. If the oxygen saturation goes below the norm of 95-98% (varies with how far above sea level you are) then I know it's time to check in with the doc for a blood test. It costs about $50 on Amazon. I have compared it to the one at the doctors office and it is good for accuracy.
This gives you some peace of mind, that your tiredness is not from low red cell count. It could just be tiredness from the Revlimid or whatever chemo your husband is on.
Take care
Eric
What an amazing description of uncertainties in life that have impacted ya'lls lives, yet you push through the days to not let it control your lives, as each day is precious. Wonderfully expressed and each reader can so relate to their own version of this "puzzle".
Thank you for being an inspiration to all who read each of your articles, as no life struggle should be walked alone.
Thanks for the great tips and the kind words everyone! Nancy and Eric, the folding trolley and blood saturation meters are great ideas. Marvin and Sharon, I really appreciate your support and encouragement.
Good health and peace to you, your loved ones, and all who are touched by multiple myeloma. Keep strong everybody!
Dear Tabitha,
One of my relative have MM and sometimes I feel that I am going crazy, but life is going on whether you like it or not.
Try to be positive and happy as much as you can.
Once your husband is happy, his WBC will increase.
Have a great day.
A very remarkable metaphor to use for this excruciating, devil of an ailment. Jigsaw puzzle. Jigsaws can be solved, yes. Lets pray this one gets solved soon enough for our loved ones to be cured completely.
What an apt analogy, Tabitha!
When my mind wanders, I sometimes catch myself thinking about different analogies or metaphors for multiple myeloma and cancer in general. I'm not sure why. Maybe it helps me simplify something that is inherently complicated on so many different levels.
In my day dreaming about this, though, I've never thought of jigsaw puzzle, but it "fits" so well. (No pun intended.)
I've never been comfortable with the war/battle/fight metaphor. Now I'll think of myself as being one small piece in a giant puzzle, rather than a soldier in a battle. I like that a lot better.
Thanks for a great column!