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Myeloma, Party Of Two: Piecing Together Myeloma

By: Tabitha Tow Burns; Published: March 1, 2015 @ 9:03 am | Comments Disabled

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 [1].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


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