Sean’s Burgundy Thread: Withering Heights
Now you know that multiple myeloma is a blood cancer, and I know that multiple myeloma is a blood cancer, but try telling that to my aching bones.
While I’m no stranger to myeloma’s common calling-cards of fatigue from anemia, the bruises and bleeding caused by having too few platelets, blood clots, and various infections such as pneumonia, it’s my skeletal system that seems to vie for center stage attention more often than not.
At my November 2008 stage III diagnosis, imaging tests revealed that I had more lesions on my bones than a firehouse Dalmatian has spots - and at least as many lesions as my second-grade Irish girlfriend had freckles. That’s a lot.
There have been fractures in my ribs, vertebrae, shoulder blades, and other bones. Sadly, many of you have similar experiences.
Early in my treatment, I caught a nasty cold and proceeded to sneeze and cough without abandon. Within days, hiccups were added to my repertoire. Pain wracked my entire frame.
Ahhh-chooo! Ouch! Hack! Ouch! Hiccup! Hiccup! Ouch! Ouch!
Thankfully, the sneezing and coughing gradually disappeared and I was prescribed baclofen to alleviate the persistent hiccups. But like a Pavlovian dog, I am now conditioned to associate sneezing, coughing, and hiccupping with intense rib and back pain.
I once fractured a rib by reaching for a cup of water on a stand placed next to my chemotherapy infusion chair.
Another time, while a technician was helping me sit up after a PET scan, I felt a sudden pain in my chest. The technician heard me moan, laid me back down, and summoned a doctor. Sure enough, I had just broken my sternum.
To this day, I can’t bring myself to participate in the annual Thanksgiving wishbone tug.
Some fractures have mended, others have stabilized. Successful kyphoplasties were performed on three collapsed vertebrae.
The weirdest aspect of my bone-voyage has been the nearly four-inch reduction in my height due to several vertebral compressions.
Now, when I drive, I perch on two copies of my small town’s phonebook to see above the steering wheel. I’ve grown accustomed to feeling like a little kid sitting at the grown-up’s supper table. My daughters are growing like weeds, but I am a shrinking violet.
The lower half of my body is the same height as before, but my upper body has shortened so that my belt now rides a few inches under my armpits. Maybe it’s not quite that dramatic, but my one friend teases that I remind him of his doddering grandpa.
For the first year of treatment, I was most grateful for the powerful pain medications that alleviated my severe discomfort. Now I only use such meds as is necessary. To compound things, I also have neuropathy, hereditary arthritis, and a tendonitis condition brought on by the use of an antibiotic during several bouts of pneumonia.
Nobody ever said that this myeloma thing was going to be easy.
Today, my aching back is throwing a fit because it is not at all happy with my recent reckless behavior.
Yesterday, against my wife’s better judgment, but apparently not my own, I took advantage of the mild, mid-sixty degree weather and attempted to do some early fall outdoor chores.
I live in Stone County, in the heart of the Ozarks of southwest Missouri. Though the county was named after English pioneer William Stone, our land is blessed with rolling hills of rich soil under which lies irregular outcroppings of, well, stone. And more stone. Big thousand-pound slabs, gravel-sized pebbles, and everything in between share space with native grasses and wildflowers.
Because of the rather debilitating effects of multiple myeloma, in recent years I have hired professionals to mow my challenging property.
But no more! Yesterday, I plunged in with great gusto to once again stake claim to my piece of terra extremely firma.
I have always resisted buying a riding lawn tractor, preferring instead to get some much-needed exercise by trail blazing a push mower over the land. I’ve always enjoyed the rumble of modest horsepower at my beck and call as I hacked away at fescue, Indiangrass, and other assorted indigenous growths.
Of course, with all of the stone littered about, I also throw pieces of chipped rock in all directions. Everyone, including the dogs and the kids, know to steer clear of the premises before the slinging commences.
On mowing day, my crusty neighbor, our hometown window replacement guy, waits with fingers crossed for an errant rock to shatter my windows which, in turn, will help fund his kid’s private school. He doesn’t care about my bones. I’ve thought of asking him to come over and play David and Goliath.
On the downside, I am constantly re-sharpening or replacing mower blades. My record for one summer was five new mower blades.
Although I only made it through a quarter of the job, I felt good about my success. At least my spirit felt good, but my body hurt!
So today, I will rest my weary bones and celebrate what I was able to accomplish by enjoying a home-cooked meal and a movie with some friends and family.
We have one of those online streaming movie services, so the suggested titles came pouring forth:
One guy offered “Walking Tall,” another requested “Get Shorty.” Then there was “Breaking Bad,” “Stuart Little,” and “Tiny Toons,” followed by “Smallville,” “Bones,” and any of the “Honey I Shrunk” franchise of flicks.
I saw where they were going. Not to be outdone, I offered to cue up a movie based on one of Emily Bronte’s classic novels.
“Emily Bronte? The movie ‘Wuthering Heights’?” my owlish, over-educated friend asked.
“No, a sequel: ‘Withering Heights.’”
Now the groans were theirs. No bones about it, it is better to join them then fight them. At least it doesn’t hurt much to laugh.
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 .
Great column, Sean! i know what you mean about loss of height, and it seems fairly usual in my support group too. It seems that the taller someone is (was) the more they lose some height from vertebral fractures...I know I lost at least an inch, but refuse to admit to more that that! Hope all goes well with you too. We were watching 'The Hobbit' the other night!!
I'm still in denial over height loss too.
I just put in bigger arch supports..but my loss is only an inch.
Sean--Breaking Bad is a must watch show for somebody with cancer.
Watch it on Netflix and start at the beginning. Amazingly high quality tv (spielberg quality).
But the story is soooo gripping and real. Especially for the breadwinner of a family who is diagnosed with cancer.
Sean, sorry to hear about what you have been through. I sneezed once and fractured 2 ribs, when I was first diagnosed. Luckily, I haven't had other bone problems, but I have loss 2 inches in height. BTW, MM is also called Bone Cancer and in your case that seems appropriate.
Sean, I have been a voyeur of your columns but couldn't help but comment on this one. It is so important to keep your sense of humor and that is what you do so well. What I related to this time, was the need to do something you know you should not be doing.
In a desperate attempt to remain a vital part of my grandson's lives (6+8), I decided their could be minimal risk playing soccer goalie for just a few minutes while my husband stepped out of sight. Needless to say it did not go well, rolling over the soccer ball and landing on the concrete.(yes,we were on a concrete basketball court). Nothing broken ...just really sore after that and a flight back from the West Coast.
I have been on two cycles of RVD,one stem cell and PVD which I had to go off because of extra medullary radiation. Tomorrow is an appt. For the next trial. I have to admit the 10 minutes of soccer was worth it although I am not looking forward to telling my doctor. Stay well and keep writing...I like to chuckle.(at your attitude). Stay well.
A delightful accounting of what life has been like for my husband, since his myeloma diagnosis. You have described things succinctly. Some things people just can't believe are even possible, until you actually have myeloma, and then it all rings true in every sense, in every word just as you have described it. Thanks for doing it in a way that humbles one, but yet adds a smile. Take care Sean.
I am very familiar with with that stoney ground. I've watched my son-in-law scoot around his yard on his riding mower throwing rock chunks in all directions in north central Arkansas.
I too have lost 4 inches of height and I use that as an excuse for my belly beginning to protrude. I just say it is being squished out!
Completely agree with the humor aspect of dealing with this disease. Since my wife, myself, my son-in-law and then my wife again have all been diagnosed with one form or another, it has been a roller coaster ride. Thanks for sharing your ups and downs as well as your humor with the rest of us.
I mow my grass by myself as well but it is a small yard and walk behind the mower. I need to pay more attention to my blades as I have not sharpened them, ever, oops! You have made me feel like I am torturing my lawn!!
Great to hear that you have become more active!!
Ron
I do not have much bone involvement, only one spine fracture, and a rib and hip leasion.
I am just short to begin with! (5 foot 2 inches) I don't know what kind of car you drive, but most cars now have an option of upgrading the driver's seat with on that not only moves closer and farther from the stearing wheet, but also goes up and down so short people can see over the dash. And of course a tilt steering wheel is a must
Sean, sounds like you've had a rough go of it..I've been diagnosed 4 years ago with smoldering myeloma and I worry allot about the future but after reading your article I realize I have a cake walk compared to your ordeal.. I'm lucky to be in an NIH study and living in Phoenix I'm close to the Mayo it doesn't get much better than that..Hope you continue to get better and when mowing your lawn beware of Bigfoots as there have been many sightings in your area lately,a little humor there, very little...
@Nancy - Thanks, Nancy! The Hobbit - Ha! love it! Take care and keep sharing in your wonderful column.
@ Stann - I haven't thought of arch supports or platform shoes! I agree with you, Breaking Bad is outstanding. I am watching it on Netflix and I've managed not to hear how the series ended. Thanks for the suggestion. All my best!
@ George - reading that you sneezed and broke ribs made me wince all over again! Thanks and be well...
@ Deb - Thank you! I'm glad that your time in goal wasn't more serious. We can't stop doing everything that is marginally dangerous, can we? Your grand kids, and my kids, need us to be there. You please stay well, too. I hope that your appointment went well.
@ Vickie - You are right, we couldn't even begin to imagine what life would be like with MM without experiencing it first-hand. All my best to you both.
@ Scott - it is odd thinking about where our organs go when our height shrinks. When I do sit-ups, this thing comes popping up (my stomach, I assume) in a way it never did before my height loss. I am very grateful that my breathing and digestion don't seem to be affected. Hang in there and watch out for those flying rocks when you visit your Arkansas clan.
It's amazing how different things are 4 inches lower, isn't it?
@ Ron - Ha! Better you torture the lawn than it torture you! Happy mowing and feel good.
@ lys2012 - thanks for your note! Thankfully, my auto does have adjustable seats - and I adjust the heck out of them! I pray that your bone involvement is kept to a minimum. One vertebral fracture is enough! Stay strong.
@ Ralph - thank you for your kind words! I hope that all goes well with your treatment. Bigfoot, I love it! You know, Ralph, some of my long bearded neighbors may well be from the Bigfoot family. Try not to worry too much; easier said than done, I know. I will pray that if you do progress, it won't happen until you are 100 or 110. Deal? Phoenix and Mayo - it doesn't get much better than that. Hang tough.
Reading about the fractures brings back bad memories. I was diagnosed in 2011 I've had 10 vertebra fixed and I have lost over 2 inches in height. My last back surgery when they rounded me off the table broke 2 ribs. I cringe when I sneeze or cough in fear of breaking a bone. I've had 2 stem cell transplants and still taking oral chemo nightly, velcade and Dex weekly. Along with bones issues I'm having a lot of trouble gaining weight and not from over eating.
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