Sean’s Burgundy Thread: Myel-Stones
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 (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.
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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We'll get 3 donuts. One for hubby, one for me, and your favorite is??? We'll share that one and pray for you.
My father-in-law in NW Iowa meets 9am weekdays as he is able at the cafe in their little town. They play a payment game (everyone chips in 50 cents first) and then someone thinks of a number and around the circle they go. The "winner" pays the balance. Imagine. Almost-free donuts for you, Sean! Or not. But not on your birthday. The birthday boy pays the full tab. I love little towns.
Great column, Sean! A nice small supportive group of MM'ers...I could practically smell the coffee brewing! I had to chuckle when having one of those seasonal lattes at a well known 'emporium', one of my daughters ordered it with skim milk, and 1/3 the sugar syrup! I guess that helps!
Fantastic article Sean. My son owns a condo in Branson, Mo so we spend a few weekends there each year. Beautiful country and great small town atmosphere. Much like the small town in Illinois where we live. I can relate to the donuts, especially since just before my diagnosis I had gone on a new diet and training mission. My oncologist suggested I abandon that idea, at least temporarily, while I undergo 16 weeks of induction. While on dex, I want to eat everything in sight; even cardboard looks good. So bring on the donuts. On a serious note, I really am trying to keep the weight gain in check and being a pharmacist I know I need to!
I'm envious. Sure wish I had a group to gather with from time to time. Only another MMer really understands. Besides that, I LOVE DONUTS!!!!!!
Love this column, Sean. Makes me want to go out and eat donuts--one in your honor and one in mine!
I don't know how you manage to be so funny month after month Sean. You should write a book called "The Funniest Stories You've Ever Heard About Multiple Myeloma". OK, it might not be a monster seller but I'd certainly snap up a first edition. But I'm afraid I could never drink coffee with you. I'd spend too much time cleaning up after snorting coffee out my nose.
Sean,
Your Myle-Stones column was terrific and lots of fun to read for this Myelomic.. I'll be calling the local cancer support org here in Akron, Ohio to get the names of a few Myeloma guys to buy expensive coffee and shoot the shit.
I've been to myeloma family seminars in Florida and Minnesota, UAMS conversations in the bone marrow lab and MIRT waiting room (which have often been great and informative), big group presentations at the Cleveland Clinic and lots of phone conversations with recently diagnosed friends of friends and all those activities have had their place and value.
But, when it comes to down-to-earth conversations (not about myeloma), nothing has beat getting together with the other men stranded by our wive's book group. We go to a movie, have dinner and sit and talk. Once a month. Been getting together for years. Four of the eight of this group have dealt with cancer but that topic never comes up and that's fine with me. We all need a little vacation every now and them. But getting together with a few fellow myeloma patients can be great. The conversations just pour out.
We have a Dunkin' Donuts shop in our neighborhood. Thanks for the inspiration.
Michael Lapides
Sean,
You know there has been research published that showed that patients who were overweight at the time of diagnosis had a better prognosis for survival. I am waiting for the research that shows that overweight myeloma patients in remission have a better longevity, so that I can justify my doughnuts! Keep smiling.
Hi Sean -- So...here I am right now riding Amtrak snacking on a Krispy Kreme Original Glazed and I pick up your column. How appropriate.
I love reading all of your stories. I wish one day I could meet you personally. If I thought that you and your friends wouldn't run away, maybe one day I would love to crash one of your donut outings. (Smile) you see I am female and black so I might stick out like a soar thumb. But the thought of traveling just to sit and talk to someone like me with Mm sounds so fun. Right now I am all about living and having fun!
@Ginny in PA: Thanks for thinking of me! I’m pretty much a simple cake, not too much frosting or glaze, kind of donut guy, though a good chocolate croissant can ring my bell. I eat them so rarely that when I do, they are a real treat. I may have to convince the gang to give the ‘payment game’ a try. You’re right- there is something special about a small town. Be well!
@Nancy Shamanna: My farmer friend in the group refuses to call skim milk ‘milk’! Instead it is ‘blue water’. As much as we hate that anyone has to deal with MM, it is nice to have someone nearby that ‘gets it’. BTW – I greatly enjoyed reading your fascinating article ‘Meeting the Enemy’ published just today. We certainly are indebted to those folks. Be well!
@Randy Strode: Thanks, Randy. The Branson area is a nice place to raise kids and enjoy life- maybe we’ll run into each other on one of your visits. Although I quickly lost weight during my initial induction rounds of chemo, dex did make the nausea vs hungry push-pull kind of an odd experience. As much as I have appreciated the power of dex to make the novel agents more successful, I’m still trying to lose the weight that I gained during the consolidation and maintenance periods. All the best to you as your treatment moves forward!
@Scott H: For some reason my small area has several MM patients in various stages of treatment. I am fortunate to be able to get together with them once in a blue moon. I find the informality of the meet ups to be quite appealing. We don’t pretend to be a bona fide, information intense support group. A cup of Joe, a donut, and a listening ear seems to go a long way. Maybe you can reach out and create something similar in your backyard?
@April Nelson: First of all, thank you for your excellent December MB article. I didn’t know about the ‘muddle through somehow’ lyric history of ‘Have Yourself a Merry Little Christmas’. I found your words and your story very poignant. I hope that your MM news gets better and better and you can bet that next time I will enjoy a donut in YOUR honor. Be well!
@Holt said: Thanks! A publisher would be taking a big risk adding me to their imprint. It would give an editor a full-time job! You know as well as anyone that there is nothing funny about cancer (and MM), but there is lightheartedness and humor in the people who face these monumental challenges. It’s part of our humanity to want to soften these harsh experiences. It’s how we cope. When I lose my ability to eek out some joy in the midst of my battle, I’ll probably be done. I have a sneaking suspicion that you are a pretty funny guy, yourself! Big blessings to you!
@Michael Lapides: Fantastic to hear about your book club orphans group, sounds like fun. There is just something meaningful about belonging to a group, whether it’s formal or casual, serious or not so serious. Not everyone is a joiner (in many ways I’m not), but I know that even those brief minutes (or sometimes hours) spent in the MIRT waiting rooms have provided me with a connection to folks who, in many ways, are just like me. How valuable is that! With your experiences, you sound like the perfect person to reach out to some other MMers. I wish you much success in your journey. Dunk one for me!
@Barb Sarbaugh: Ha! If being un-thin is a positive prognosticator of treatment success, I have it made in the shade! I’ve learned that I can eat an occasional donut, but I can enjoy all of the no-calorie donut holes I want. You keep smiling, too!
@ Lou Ganim: It put a HUGE smile on my face to think of you chugging down the tracks, munching on a KK hot and fresh one, and that you came upon my piece. Thanks for checking in – I hope that you’re hanging tough. Your columns were always BETTER than donuts!
@Music meme: Ain’t no such thing as a sore thumb in my world! Lots of other sore parts, don’t you know, you’d fit right in! I wish you much fun and good health in your journey. You might be surprised how much impact you can have in the MM world right at your backdoor or in some other corner of the world. I love your 'music meme' handle. Keep living big and keep in touch!
Thanks so much for writing! It's just motivated me to see if I can find a myeloma group here in the Baltimore area. Most peoples's eyes glaze over if one tries to explain even the basics of myeloma - or I get tons of advice about nutritional schemes to fight off cancer and how I shouldn't have sugar or dairy or acidic things or meat or anything I would really like to eat... And like most people on dexamthesone, I want to eat everything at all times. Good for me since I had lost so much weight before being diagnosed (spending lots of time in African villages eating rice and vegetables never helps a skinny guy like me to gain weight). I was diagnosed the first week in October 2013. Now I've just had my 10th chemo infusion and happily, the doc says my improvement is dramatic. I'm almost back to my normal weight and I have tons of chemically-induced energy (I've adopted the old DuPont slogan: 'better living through chemicals'!) Now, if I can STOP the weight gain after maybe 5 - or ten - more pounds, that would be perfect and my clothes will fit just right again. But donuts sounds awfully good right now!
I would love to meet you on one of our excursion trips to Branson. When we go I will shoot a message out to you and just maybe share a donut and a cup of expresso. Keep the humor flowing. It does help and we all know it is desperately needed to fight a serious disease that we face. We all know things are serious and rightfully so, but its nice to have our fun times as many as we can get!
Hi Sean I am sure the research Barb talked about is out there. Or if not I am definitely a willing participant. I have to tell you about the secret of calories - If you break the food first all the calories fall out ;).
I hope everyone is enjoying their own particular "donut". Libby