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Sean’s Burgundy Thread: Saying Goodbye

By: Sean Murray; Published: September 4, 2012 @ 11:51 am | Comments Disabled

Four years of ongoing chemotherapy may have made my memory a bit fuzzy at this point, but I don’t exactly recall having scribbled the following onto my bucket-list:

"Get multiple myeloma, say goodbye to life as you know it."

I certainly have no desire to prove my mettle by taking on such a menacing foe. I really do have better things I’d rather do with my life.

I’d much more prefer to run the bases at Yankee Stadium, or hike the Appalachian Trail, or catch a trophy-sized blue marlin off the coastal waters of Cuba. Or a million other cool things.

Heck, knowing what I know now, I’d sooner slather my body with honey and marshmallows and square dance with a hungry grizzly bear than take on multiple myeloma. But no, I wasn’t given the bear option. Myeloma is my dance partner, and unfortunately, it wants to lead.

Maybe I’m on its bucket-list.

Oh well, goodbye to my best laid plans.

Like many of you, I was waylaid, kidnapped, left kicking and screaming against my will, when cancer forced its way into my life. I couldn’t pay, pray, cajole, scream, or cry my way out of this untimely dilemma – not that I didn’t try.

Mine is a somewhat typical story. I was in my 40s, content, happily married, and a father of two young children. A simple backache led to a two-week cascade of events that ended with a shocking diagnosis of late stage multiple myeloma.

I found myself conscripted into a disparate, some would say desperate, army of cancer patients holding out hope for a cure, or at the very least some modicum of relief against this seemingly implacable blood cancer.

Goodbye travel. Goodbye job. Goodbye normal life.

Okay, all hyperbole and melodrama aside, multiple myeloma just plain stinks.

If you are like me, you try to live your life as self-sufficiently as possible. We all like to call the shots and fend for ourselves.

But with myeloma, we have to place our trust, and our very lives, in the hands of a band of medical professionals who are charged with keeping us alive and as intact as possible. Deep down, we know that they aren’t miracle workers, but fair or not, we hope and pray and expect them to deliver miraculous outcomes.

These brilliant, highly esteemed individuals do what we cannot do; they are the experts. I might try to fix the plumbing or mend a fence, but I can’t fix multiple myeloma.

Goodbye control.

I have said goodbye a lot in my life. My father was in the Air Force, and like many military families, we moved around. It’s a lifestyle where you make friends, and then you move away a few short years later. It happens in college, as well. And with a career in the Gypsy-esque live entertainment industry, I have seen countless short-lived friendships. In each instance, you make quick friends knowing that you may well never cross paths again.  You get used to saying goodbye.

Enter multiple myeloma – stage left, I mean stage III.

I was first treated at a large myeloma center, where I was fortunate to have connected with lots of fascinating patients, caregivers,  medical and support staff, who came from all walks of life and from all over the world. They were young and not so young, men and women, people of deep faith and people of no particular faith.

My newfound friends and I commiserated about our clinical trials and tribulations.  We cheered each other on and prayed for one another’s families and offered encouragement to ‘stay strong’ and ‘hang in there’ and ‘stay ahead of the pain.’

Together, we shared powerful moments as people undergoing what was likely to be the most harrowing, off-balance, frightening period of our lives.  We were confidants during a time when the ultimate stakes were the highest possible: life or death.

I have been surprised and overwhelmed by the depth and intensity of some of the bonds that I have forged with my fellow patients and caregivers, both from my clinic and from within the world-wide myeloma community.

I don’t have to look far to witness true courage and astounding perseverance. I see these traits in so many people battling myeloma. And through each of our adventures, or misadventures, we discover that we are a more resilient, less fragile group than we would have ever predicted. We continue to endure.

As someone who easily moves on, I find myself not wanting to say goodbye to my compatriots. And so I keep in touch with many of them. They have helped make me a better equipped, more capable, more hopeful patient.

Sadly, I have had to say goodbye and Godspeed to some of my myeloma friends. They have moved on to the next place, myeloma no longer torments them. In their passing, and in their honor, we pledge to continue the good fight until multiple myeloma is vanquished.

In the meantime, I'll keep plugging away at my bucket-list. Now where is that bear?

Sean Murray is a multiple myeloma patient and columnist at The Myeloma Beacon.

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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