Sean’s Burgundy Thread: Stormy Weather
My circle of creative-thinking friends once likened my up-and-down battle with multiple myeloma to being subjected to a series of wildly unpredictable storms.
I suppose that it’s true.
Using my friends’ template, I do sometimes find myself immersed in a rather serious medical situation akin to a violent assault of lightning, thunder, and torrential rains. At other times, I put up with a cold or infection that clings to me like a fog and nags me like an inconvenient drizzle.
Thankfully, there are stretches when I’m feeling good and the skies remain bright blue and crystal clear.
A couple of days ago, the warning sirens in my small southwestern Missouri town disrupted the afternoon quiet with an eerily ominous wailing. I knew that it wasn’t the time for a regularly scheduled preparedness test, so I instinctively sprang into action.
I herded my clearly agitated dogs together, and we hightailed it down into the basement, the safest place in the house in which to weather a storm. As I tried to calm the barking 40 and 50 pound pups, both of whom were trying to sit in my lap, I flipped on the radio and heard confirmation that the National Weather Service had, indeed, issued a tornado warning.
My thoughts quickly turned to my wife and children. At that particular time of the day, Karen would be teaching music to kindergarteners in the primary school, Lizzie would be doing her third-grader thing at the elementary school, and Katie would be in math class at the high school.
I wasn’t worried about them because I knew that specific emergency plans of action for each site were in place. I trusted the plans, and I trusted the people implementing the plans. I could picture the grown-ups heeding the sirens’ call and leading the kids in orderly beelines (maybe even boy-girl-boy-girl in Lizzie’s case) to the safest areas of their respective buildings.
Concern about severe weather comes to us naturally in the Ozarks. It was a year ago, in February of 2012, that my town was hit by a twister that damaged or destroyed more than 50 businesses and residences just minutes away from my home. Several months earlier, a devastating tornado had ravaged our neighbors to the west in Joplin, Missouri, killing 161 people, injuring nearly a thousand, and leveling a third of the city. We take weather seriously.
While I was sequestered down in the basement sanctuary with Rexie, Peppermint, a diet pop, and my trusty AM radio, I decided to step outside to take a quick peek at the sky. Just as I looked up, the cold rain began to fall.
Here’s the weird myeloma-weather part. When the water droplets hit my face, I was instantly reminded of the dark day in November of 2008 when I was diagnosed with an advanced, late-stage case of multiple myeloma. Here is what happened:
I have always had vivid dreams, but on the night that I was told that I had myeloma, I dreamt that I was standing in the center of a corn stalk maze, miles away from anything familiar to me. Dark clouds began rolling in, fat raindrops began to plop all around me, and wicked winds began whipping the corn stalks so ferociously that it was difficult for me to stand upright. Lightning flashed and thunder boomed as the fierce storm began to bear down on me.
I was clearly afraid of standing in that electrical storm, but for some unknown reason, I couldn’t move. Even if I could have run away, I wouldn’t have known which way to go in that confusing labyrinth. I had no escape plan. I was at the mercy of the cruel elements.
Before I met with what seemed like a certain demise, I awoke with my heart pounding a mile a minute. After a few seconds, I realized that it was just a nightmare. I wasn’t standing in a corn maze. There was no wind and no storm and no danger. I had simply fallen asleep in the comfort of my recliner. All was well with the world as I breathed a sigh of relief.
But an instant later, I soberly remembered that I had been diagnosed with cancer earlier that very day.
Have you ever seen the ending of director Brian De Palma’s film Carrie, which is based on the Stephen King novel of the same name? Do you remember the last part when all was finally well, a bright sunny day had replaced the horror and darkness of the night before, and then a hand suddenly came bursting up out of the grave to shatter the peace and serenity? You know, the part where grown men in the audience leapt to their feet because they were scared senseless and church ladies screamed expletives they weren’t even supposed to know?
Well, my night was like that. First the bad news of the stormy nightmare, followed by soothing good news that it was just a dream, then REALLY bad news that having cancer wasn’t just a dream.
With my adrenalin coursing, I couldn’t fall back to sleep. If you’ve ever had an extra large dose of dexamethasone (Decadron), you kind of know what it was like. Even prayer didn’t bring its normal relief.
Because of that nightmare, the meaning of which couldn’t elude even the dullest-witted student at The Dream Interpreter School, I have formed some odd connection in the synapses of my brain between multiple myeloma and dangerous storms. To this day, the threatening wail of our town’s sirens tends to send a shiver through my blood.
I wish that there had been such a strong warning signal foretelling the oncoming of my multiple myeloma storms. How clever and fortuitous would it have been if a claxon had loudly announced, ‘Sean you have early stage myeloma, go get it checked out before all of your bones break and you ruin your kidneys’?
Alas, maybe there were some warning signs and I was just too daft to spot them.
For several months I had felt a dull ache and a tightness in my right shoulder whenever I put my arm above my head. One of my friends, sporting a sling from his recent rotator cuff surgery, suspected that I might have just such an injury. His layman’s description of the symptoms sounded reasonably similar to my complaints.
I briefly contemplated going to the doctor, but who had the time or desire to make an appointment just to hear:
Doctor: Does it hurt when you do this?
Me: No, not especially.
Doctor: How about this?
Me: Nope.
Doctor: How about when you do this?
Me: Ouch! Yes! that hurts!
Doctor: Well, don’t do that! That’ll be a hundred bucks. Pay up front.
It’s an old joke, but you know what I mean. My shoulder would probably get better on its own, anyway. Be honest, this reasoning sounds familiar, right guys? We’ll wait out the pain if it means not having to go to the doctor.
In the ensuing months, I accommodated the on-again, off-again shoulder discomfort by not doing that anymore. When I needed to reach for something, I used my left arm. I shot as a lefty when playing basketball and threw underhanded when playing softball catch with my daughters. I also mastered the competitive world of left-handed Wii Bowling.
The pain didn’t affect the normal activities of my daily life such as writing, typing, eating, brushing my teeth, driving, or playing with my pooches. Caught up in the busyness of work and the demands of life with an active family, I decided to deal with my shoulder when the perfect time presented itself. After all, there’s always tomorrow.
Meanwhile, I had noticed that my energy levels had somewhat waned as I plodded into my late 40s. Some of the old ‘get up and go’ of my younger years obviously got up and went somewhere else because I was exhausted. Seventy-hour work weeks in the live theater business were wearing me down. It probably didn’t help that I wasn’t exactly exercising regularly or getting enough sleep or paying attention to my diet.
‘So, this is what middle age feels like,’ I thought to myself. These were probably just the aches and pains and stiffness of getting older. Suck it up and get used to it.
What I didn’t know was that the myeloma storm clouds were gathering and big trouble was on the way. Bring on the tornado.
Nearly a year after my shoulder started acting up, my back began smarting. What started as an annoyance, which I assumed was caused by a pulled muscle or a pinched nerve, quickly turned into an excruciating, constant pain. And then my ribs hurt. And then my shoulder began really hurting.
That was my cue to finally go to the doctor. Duh. The sad part is that I know that I'm not alone in the procrastination game.
It seems that I had nurtured a pretty bad case of multiple myeloma. With the discovery of collapsed vertebrae pressing on my spinal cord, a lesion in my shoulder 8.5 centimeters long, broken ribs, anemia, lots of cancerous myeloma cells in my bone marrow, and blood counts way out of whack, I needed big-time help to stay alive. No wonder aspirin and a heating pad didn't help much.
Even if there wasn’t a high-decibel siren to warn me about myeloma, there were symptoms. I just didn’t know that back pain and tiredness were related to blood cancer. Heck, I had never heard of myeloma. Most people haven’t.
Perhaps if I, or anyone I knew, had been privy to the information that comes to light in stories like yours and mine, maybe I would have been smart enough to schlep myself to my doctor’s office a lot sooner. Maybe with that knowledge I could have avoided some of the fear and pain that I have endured.
My sole impetus in sharing my personal story in various ways is to help create awareness about myeloma. My journey has been made easier by the blogs, the presentations, the articles, and the one-on-one meetings with the many myeloma patients and caregivers I have encountered along the way.
Your myeloma story is important, too. You don’t have to write articles or speak to support groups to share your wisdom born from experience. I encourage you to tell what you know to anyone who will listen, even if your audience is just one person at a time.
In the Richard Rodgers and Oscar Hammerstein song ‘You’ll Never Walk Alone’ (from Carousel), the lyrics say:
When you walk through a storm
Hold your head up high
And don't be afraid of the dark
At the end of the storm
Is a golden sky
And the sweet silver song of the lark
Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown
Walk on walk on with hope in your heart
And you'll never walk alone
You'll never walk alone
Remember, myeloma friends, you are not walking through your myeloma storms alone!
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 on The Myeloma Beacon, please contact the Beacon team at
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HI Sean...hope it's 'nothing but blue skies from now on'! One of my inspirational songs to hum along to is also from Rogers and Hammerstein's The King and I...
'I Whistle a Happy Tune'..
Whenever I feel afraid, I hold my head erect
And whistle a happy tune,
So no one will suspect I'm afraid.....
The result of this deception is very strange to tell
For when I fool the people I fear I fool myself as well!"
My Mom was a huge fan of R&H when I was just really young, and the song has stuck with me ever since! She used to play all those songs on the piano and get us kids to sing along!
Thanks for another great column Sean. But you must have missed the memo about diet cola being bad for MM sufferers. Check over at Pat's place for the full story.
Another great article Sean.
Yep you're right. My journey began with back pain and I ignored it. The the rib pain started. I went to the chiro, a nurse practioner and then an MD. None of them took xrays. I finally ended up in the ER because of the pain. A couple of xrays later and I was told I had 4 broken vertabra. Well that explains the pain. The new question was How? However, secretly i knew something was really wrong and I suspected cancer, just not myeloma. Never heard of it. After an MRI I was given an appt. with an onc and the rest, as they say, is history.
I have a daughter that lives just across the border in Arkansas so I know of the storms you are referring to.
May all your skies be blue from now on!!
And this questioning of every ache and pain goes on…
I have a very similar history as you. Diagnosed in May, 2008. Advanced stage. Vertebrae replaced. Velcade, Revlimid, SCT.
I'm still showing a 0.3 M spike, so I guess that's not a true remission, but a don't-worry-about-it-Julia condition. So I really don't most of the time, but (return to first sentence)…
Sean, that was a great article, a lot of sounds so familiar ,I really enjoy tour articles so keep writing and Godbless you
Its not just procrastination, sadly. I took my mysterious rib pains to the doctor more than once over several years, but even as I described it - out of proportion to whatever knock had set it off, different from one day to the next, moving from one location to another - I could feel the disbelief, and came away feeling like a hyperchondriac. I even self diagnosed myself with somatoform disorder, at one stage, because I couldn't make any more sense of my experience. I guess the doc wasn't looking for myeloma in a healthy 39 year old. It wasn't until I fractured 4 vertebrae that another doctor suggested a bone scan, and put me on the path to diagnosis.
I procrastinated, certainly, carrying on at work for 3 months with a broken back. But before that, an unsympathetic doctor had fobbed me off for over 3 years. I wish my story was unusual, but among us "youngies" I've already heard similar things many many times.
I can't believe anyone could ignore that much pain & not take themselves to a good medical center.
I coughed one morning in 2010 & was paralyzed with pain, was carried to an ambulance. Shortly after received my diagosis at Fox Chase in Pa. I'm to old for SCT.Radiation, Revimid, plus some other meds worked well. I'm 2 yrs into a partial remission. I really don't ever feel healthy,just tired & weak, can't sleep. I don't feel like I'm waging a courageous battle, just existing day to day. I have no cute songs or poems to offer. I just tough it out on my own. I can still laugh. I've had a great life with a great husband. Judy
HI Judy, sounds like your pain was a 'rapid onset' sort of thing. My pain crept up on me gradually, and since I wasn't familiar with the general aches and pains, I attributed it to muscular pains (running, gardening etc.) and also thought I might be getting arthritis! It wasn't until my worsening low back pain caused fractures, which happened over a really long weekend (July 1, jULY 4th all strung together) that it was discovered that i had fractures. I had had medical help before that for osteopenia, but the cause had not been determined. my fault probably for not being more pro-active about pain, but I was (am) a busy person and I pushed it out of my mind!! Anyways, if you do think of a poem or a song that helps you along, you should share it too! Being a (really) amateur musician I tend to think in lyrics...I do sing in a choir, play bagpipes occasionally and take voice lessons too. Sounds like you ARE waging a courageous battle though...hope it all goes well for you. I think that Sean is also quite involved with theatre...that was his career, nest-ce pas?
The brain trys to make sense of the experieneces of the day. I my case, I dream of someone chasing me. I like to pyscho analysis my dreams, so I am assuming that the person chasing me is Death because us Myeloma patients surely think about death occasionally. However, I do everything I can to escape death in my dreams and in my waking hours. I believe that these type dreams are normal and it is just our brains at work trying to sort the events of each day. So don't look at them as nightmares and don't let them scare you. God bless
@nancy : Thanks for the well wishes – back at you! R&H are favorites of mine, too. I like your advice to Judy, thanks! You’re right, I’ve been writing and producing live entertainment for 30+ years.
@Holt : Say it ain’t so, Holt, say it ain’t so! I actually weaned myself off of diet soda awhile back. It’s just that there was this one can in the basement fridge that kept calling my name... thanks for keeping me straight!
@Scott: I’m sorry for all of the pain that you’ve had! I hope that you have found some relief. I imagine that it was an incredible shock to learn in an ER that you had broken vertebrae, and then the other show drops and you have cancer. I hope that you avoid the big storms, too. Thanks, Scott.
@Jubyanne : Isn’t that the truth! Every different tweak, pain, pinch, etc happens and you wonder if it is an everyday injury or an MM episode. I’ll join you in the don’t-worry-about-it attitude! Stay well and stay stable!
@Robert P Bean : God Bless you, too, Robert! pssssst.... it would appear that some folks don’t like faith being introduced into our MM discussions. One commenter recently told me to keep to the MM stuff and leave out my belief in a ‘mythical character.’ – his words. Fat chance! Thanks for your comments and ... you know.
@Alex Bicknell: I always appreciate your thoughtful comments. Your story, sadly, doesn’t surprise me. I’m treated at a center where they’ve seen 10,000+ myeloma patients and have heard travails like yours, and at your age, before. I know that they have seen MM patients in their teens. I am glad that you have a concrete diagnosis; I hope that treatment is going well. We know that the general population is largely in the dark about MM, but so is some of the medical profession. You know this more than most. Even in your pro-activity, you were short changed. I am fortunate that my family docs knew enough to not treat me locally and sent me to out-of-state MM specialists. Hang in there, cheers to you and your family.
@Judy Van Meter : Where there’s a will (and an overly busy schedule and an aversion to going to doctors) there’s a way for me to put things off! I hope that you can get to the point that you feel better, if not 100%. Make sure that your docs know that you’re not feeling up to snuff. Many MM patients, for whatever reason, never feel quite as good as they remember feeling pre-myeloma, exhaustion is a common complaint, especially when red blood cell counts are low. Keep laughing and fighting and enjoy your close relationship with your husband. You will be in my thoughts. BTW – from the inside out, you may not think that you are exhibiting courage, but you are! No doubt, those around you see it. Feel better.
@George : I will pray that death neither darkens your doorstep, nor your dreams anytime soon. My wife says that, in most cases, vivid dreams are the product of a highly creative and intelligent mind. Most likely true in your case. My wife says that my dreams, however, come from too much TV and too many crime novels. As Rodney Dangerfield said 'I don't get no respect!' Be well!
@Sean - LOL. What a great response and thank you for your kind comments. However, the Rodney Dangerfield quote, is a double negative, so you actually do get respect. Thank you for your informative columns.
Again another great article sean! Keep up the great work! miss you!
@Nikki - I'll see you and the gang at the end of the month for my how'm-I-doin' blood test and dose of cancer nurse insanity. We'll see who draws the short straw and has, I mean gets, to work with me. BTW - No box! Thanks for your nice words!
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