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Sean’s Burgundy Thread: Multiple Myelathon

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Published: Aug 8, 2016 3:23 pm

My wife will tell you that I am more like a tortoise than a hare because I always take my own sweet time about deciding things. I’m not so sure I agree. I’ll have to think about it and get back to you.

When I was diagnosed with multiple myeloma back in 2008, I was not afforded the luxury of channeling my inner tortoise to contemplate whether or not to begin treatment right away. I was in rough shape and I had to get moving quickly.

I met several people in those early days who advised me that ‘Fighting myeloma is like running a marathon, not a sprint.’

While I understood their wise counsel, I wasn’t so jazzed about running either one. I had to wonder if I was I made of the right stuff to run a myeloma marathon, whatever that was.

After having lived with myeloma for several years now, whenever someone mentions the marathon versus sprint adage to me, this short movie flickers away in my mind:

To set the scene, I’ve just been told that I have multiple myeloma. While still in shock, I’m handed a pair of track shoes, burgundy shorts, and a matching t-shirt – the official uniform colors of fine myeloma marathoners everywhere.

The shirt has a paper bib safety-pinned to it that shows my clinical trial patient number signifying to all con­cerned that I am a qualified participant in:

The 2008 Multiple Myelathon.

Oh, I was also given a stylish hospital bracelet, too. Nice touch. As I start to lace up the fancy, obviously ex­pensive track shoes, I worry about how expensive all of this multiple myeloma stuff will be. At least I don’t have to wear an open-backed hospital gown, I say to myself.

I have barely enough time to finish dressing and make it to the starting gate when – BANG! – off goes the starter’s pistol. Before I know it, I am swept into the sea of Multiple Myelathoners.

Okay, I can do this. No I can’t. Yes I can! Obviously I am still undecided about my abilities. Remember, this is a marathon. No need to hurry. It’s all about pacing. Be the tortoise. Just put one foot in front of the other; one procedure in front of the other; one vial of blood in front of the other. Breathe.

By then I notice that we have been in full sprint mode right from the get-go. Hey! What happened to the more evenly paced marathon that I was promised?

Those first strides knock the wind out of my sails and consume every bit of energy and focus that I can mus­ter. To make matters worse, I feel like something or someone is chasing me.

Run, Sean, run for your life!

So I run. I run so fast that my hair falls out. And I get nauseated. Exhaustion sets in and I get fuzzy brained. This happens to every Myelathoner, they assure me.

I know that I can't keep this blistering pace up for long, but just as I get my bearings and slow sprint past the marker which reads ‘Exiting Induction #1,’ I began to relax. The next jog through the Recovery Zone is man­ageably easier.

I can hear my doctors yell from the sidelines. ‘’Atta boy! Keep it up! You’re doing fine!’

As I became more accustomed to the rigors of the race, I am able to concentrate less on myself and more on my surroundings. I see occasional rays of sunshine peek through the dark clouds that follow me.

I also begin to recognize some of the other Myelathoners. Our shared experiences connect us. One of us stumbles and another runner grabs his elbow to steady their new found friend. Everyone stumbles from time to time, including me.

When I am thirsty or hungry, an arm reaches out from the crowd with shouts of ‘Water!,’ ‘Gatorade here!,’ or ‘Orange slices!’ I recognize my family and friend caregivers giving out cool drinks and morsels of food that I can keep down. They take good care of me.

I see my nurses showering me with encouragement as they hand me chewable tablets for this and that, cool washcloths, and ice chips to help make me feel better.

I hear people I don’t even know shout ‘Go, Sean!’ I am amazed to learn that they are the researchers and scientists who work themselves to the bone so that we can keep running our races. I am overwhelmed to sense friends all over the world praying for me.

I am not alone.

The clear and confident voices of my doctors coach me to ‘Run this way! This next part is rugged and wind­ing, but we’ve mapped it out for you. We’ll be there when you need us!’

And rugged it is. It is like a cross-country race. A couple of times I end up having to take unplanned detours onto the dirt and grass as I jump over logs and splash through the pouring rain before I make my way back onto the paved road. Just speed bumps I call them.

The Myelathon gets tough again as I enter the Induction #2 section, but I have been through this kind of terrain before so I handle it better this time around. I am overjoyed to see the next Recovery Zone come into view.

It gets rather treacherous as I go into the First Transplant portion of the race. I feel like quitting, but after pray­ing I keep going.

Then I completely veer off the intended course by stumbling into the Blood Clot Wilderness Area. It takes some drastic measures but again I find my way back.

I am thankful that the Second Transplant run is easier than the first. After another Recovery Zone I charge through the two Consolidation stretches of the race without many problems. I enter the long Maintenance phase of the Myelathon and chug along at my measured tortoise gait.

It is during this period that I first notice the relay baton in one of my good friend and fellow Myelathoner’s hands. He has run with me from the beginning; we were close. He says that he knows that it is time for him to head on to his Finish Line and that it is my time to carry the baton forward.

He slows down, slips the baton into my hand, says 'I'll see you down the road,' and asks me not to be sad. He makes me promise that I will keep running hard. Then with a wave he branches off toward what he calls 'My Reward.' I can hear the throngs cheering for him as he runs out of sight.

It’s hard to run when you are crying, but for him and for all of my other Multiple Myelathon friends, I step up my pace more determined than ever to finish with grace.

Someday it will be my time to pass along the baton. Who knows, maybe my Finish Line will have a banner stretched across that reads ‘CURED!’ Even if it doesn’t, that will be okay, because I believe that the day will come when Finish Lines with ‘CURED!’ banners will be the norm.

Who knew that a Myelathon is really a marathon, a sprint, a cross country race, and a relay all rolled up into one?

Until multiple myeloma came along, I didn’t know that I could run, even at a tortoise's pace. And if I can run, you can run! Rest assured that there will be a bunch of us loudly cheering you on all of the way!

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 .

Photo of Sean Murray, monthly columnist at The Myeloma Beacon.
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12 Comments »

  • Lori Puente said:

    You always paint such vivid visuals with your words Sean! Another great read! Sounds like a running fund raiser slogan for us. :)

  • Holt said:

    Beautiful Sean. As Neil Young sang "Long may you run, although these changes have come".

  • Katy Morgan said:

    Sean,

    You're a very creative and positive person. Praying "cured" come turning up for everyone very soon.

  • JBH said:

    This was really a wonderfully creative analogy and very poignant. Thank you.

  • PattyB said:

    Sean - I was breathless reading your column! Having run marathons and half marathons with my husband, I could picture every step of your race. Initially, our jourmey with multiple myeloma felt like a a sprint, a very long sprint. Now that we are more than two years into the "race," it is starting to feel more like a marathon with a rhythm and tempo. We certainly can identify with so many of your experiences. And like you, we hope to see that "CURED" banner reaching out to us in the future.

  • Mark11 said:

    Great column! Thanks for your contributions to the myeloma community.

    "Who knows, maybe my Finish Line will have a banner stretched across that reads ‘CURED!’"

    You definitely deserve to cross that CURED banner!

  • Mike Burns said:

    Sean, you've written so many wonderful columns for the Beacon. This one is your best yet! Thanks for carrying the baton; I hope you keep carrying for many, many more miles.

    Mike

  • Helen Liang said:

    Your words moved me to tears, Sean. What a wonderful analogy! I hope, as you do, that there will soon come a day when the Multiple Myelathon finish line will have a ‘CURED!’ banner to greet the Myelathoners. And I hope you will be there to cross it.

  • Maureen Nuckols said:

    Sean, this column touched my heart, with your images of your myelathon. Especially how you viewed others who have handed over their baton to you. It gives us a responsibility to carry on with some grace and to encourage others. Which you do regularly.

    I have compared my journey to a triathlon, but you captured it with a Multiple Myelathon.

    Thank you.

  • Jody said:

    You always nail it Sean. I'm in the part where I've been running so long most everyone has forgotten I'm still running. Still hoping to cross that 'cured' finish line though!

  • Diana Barker said:

    Sean, you brought me to tears. Your writing is wonderful, I am on that race with you, and I still am. Lets hope and pray that "cured" will soon be at the finish line for all Multiple Myelathon runners.

    Thank you.

  • Brenda said:

    That is the most beautiful analogy I have read Sean. Having participated in marathons myself, I could so relate. Six years later I am still in the "race", moving more slowly, but enjoying the scenery. May we cross the CURED finish line together.