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Sean’s Burgundy Thread: Myel-Stones
By: Sean Murray; Published: January 7, 2014 @ 5:39 pm | Comments Disabled
A medley of my local multiple myeloma buddies and I occasionally gather together to shoot the breeze over mugs of high-priced coffee and an enticing assortment of sweet treats.
Accustomed to dietary restrictions, our klatch has determined that one of those delectable goodies is perfectly suitable for folks like us to consume -- in moderation, of course.
You see, way back when, some astute dessert engineers cleverly inserted a large zero-calorie hole smack dab in the middle of said treat. You read it correctly -- a large zero-calorie hole! Genius!
What? You’re skeptical? Perhaps I should communicate more clearly.
We eat donuts. There, I admitted it. We eat donuts!
Please don’t judge us too harshly. In fact, let ye without Cinnabons cast the first stone.
Like some of you naysayers, my wife doesn’t buy our healthy donut theory, either. She hasn’t had to wage a dexamethasone [1] (Decadron) weight gain war. All she can muster is ‘you haven’t been on dex for a year,’ and then she asks me to cite a clinical trial outcome supporting donut therapy. Killjoy.
But that’s okay, don’t worry about me. I’ll have you know that there are times when I don’t have a third donut and sometimes I don’t even have a fourth one. I can quit at any time. Seriously.
We will just have to agree to disagree. I’m used to it. Disagreements happen a lot in the myeloma world.
Speaking of keeping good health in mind, I almost always make it a point to pour a splash of skim milk into my bottomless mug of Waka-Waka-Mocha-Wowser-That’s-A-Lotta-Choca-Java or whatever they call it. It takes forever to order.
I actually feel good about being proactively health conscious when I choose the less caloric Skinny- Waka-Waka-Mocha-Wowser-That’s-A-Lotta-Choca-Java.
Anyway, it’s probably best that we move on.
Because we can’t easily travel from here in the Ozarks to the closest official multiple myeloma support groups in Kansas City, St. Louis, or Little Rock, we make do with our small, informal, yet surprisingly informed, multiple myeloma group.
Our conclaves aren’t regularly scheduled or rigidly structured. They just sort of materialize when needed. At any given time there may be three, four, or five of us in attendance. We all fit at one table, and there’s plenty of room for guests -- or more donuts.
The participation may vary when it’s hunting or fishing season, or if one of us is unavailable, under the weather, or undergoing a medical procedure not considered appropriate for a public audience to witness while patronizing a donut emporium.
But come to think of it, I’ve never thought about taking the donuts to a medical venue. Who needs fentanyl? Maybe a chocolate éclair could take the edge off of a bone marrow biopsy. I’ll research that and get back to you.
I am our group’s Arkansas multiple myeloma treatment delegate. A couple of others are patients in St. Louis, another in Texas, and another in Tennessee. Our varied experiences and perspectives add a depth and richness to our meetings. While there is much common ground, there are also divergent opinions regarding the nuts-and-bolts of treatment.
And except for one guy who simply refuses to use a computer or a smartphone, we are all modestly Internet savvy and have access to qualified multiple myeloma information.
We’re all Myeloma Beacon fans, too, but the other guys aren’t much impressed with one Beacon columnist’s work. I frankly think that my columns contain too many multi-syllable words for them. (Did I write that out loud?)
Our caffeine-fueled discussions can typically be categorized as follows:
MY TOWN NEWS: This chatter is dominated by high school sports, local politics, lake levels, bass and trout reports, business activities, bake sales and car washes, feuds, and other various and sundry small-town community topics du jour. CNN eat your heart out.
MILESTONES: These are announcements and descriptions of important family events and celebrations such as birthdays, weddings, anniversaries, baptisms, graduations, promotions, funerals, and such.
We mark our continued survivorship by such calendar events.
MYEL-STONES: And then there are roundtable discussions and debates about the sobering reason we all came together in the first place: we all have multiple myeloma.
Recognizing that our conversations are not necessarily fodder for every faint-of-heart Tom, Dick, and Harry who happens to be slurping a cup of piping hot coffee at the next table, we generally talk in hushed tones interrupted by tons of raucous laughter.
On any given day, myel-stone topics might range from recent lab work results to latest appointment details, to dexamethasone war stories, concerns about medical costs, clinical trial updates, to just about anything else having to do with our personal myeloma journeys.
We do, indeed, enjoy lively discourse such as whether subcutaneous injections are better than intravenous infusions or if using Press n’ Seal off-label is okay to cover central lines when showering. You know -- normal small talk.
Anyone brave enough to try to join in the discussion without the proper diagnostic credentials soon bears the tell-tale, glazed over countenance of one traipsing into bizarre and unfamiliar territory. But rest assured, we are more than happy to share Myeloma 101 facts with those sincerely interested in learning.
When pressed, we would probably have to confess that we don’t necessarily gather to confab about the latest myeloma news, as interesting as it is. We each have great doctors, access to information, and are comfortable with where we currently stand.
It is in that modest hometown setting that we are pleased to break bread with friends who possess a significant level of understanding about what we are facing. We can’t get that kinship from other people or necessarily from patients with other forms of cancer.
It is powerful to recognize someone’s struggle and to be able to encourage their resolve because, in many ways, you have walked in their shoes, and vice versa. It is powerful to pray with and for comrades.
Above all, we are blessed to still be here. Have a donut and a think of us.
Sean Murray is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here [2].
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at
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[1] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/
[2] here: https://myelomabeacon.org/author/sean-murray/
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