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Living with Multiple Myeloma - Animated Explanations

Bill Medley, Myeloma and Me

An interesting thing happened to me yesterday. After my every Wednesday mid-afternoon chemotherapy maintenance infusion (30 down, 126 to go!) I went to a local coffee shop to grab a quick sandwich. It was busy as usual during Branson's tourist season (the local population is approximately 7500 with nearly 7 million annual visitors) and I ended up sharing a table with some nice folks from California.

A husband and wife and their 70-80-ish mother and I struck up a friendly conversation and they asked me about the small burgundy ribbon affixed to my shirt. Not one to be shy, I took the opportunity to tell them about Multiple Myeloma - which is exactly why I wear it. The father shared that someone in his work circle passed away from Myeloma four or five years ago and that he had learned more about the disease in ten  minutes of our chatting than he did when his colleague was ill. I think that he felt a bit guilty about this. They asked me if I had someone close that had MM and I said that 'you're looking at him.' They were comforted knowing that advances were being made in treating the disease. I was comforted that I didn't have a proverbial 'Myeloma' stamped on my forehead! The concern of these strangers-now-friends was very touching.

As a show writer/producer I'm always interested in knowing what kinds of entertainment experiences are on tourist's schedules. Branson has more than 100 live shows. Mom's face brightened and, speaking for the first time, she said in a lilting British accent 'We're going to see Bill Medley of the Righteous Brothers!' She was beaming.  And a smile crept across my face.

I was diagnosed during Thanksgiving week in 2008 at the University of Arkansas for Medical Science's Myeloma Institute and I convinced my doctors to let me go home on December 6th for a few days because some of my entertainment friends in Branson were producing a benefit/ we love you Murrays show with a lot of Branson entertainers and friends participating. I'll tell you about that amazingly moving evening some other time. All I knew was that there was no way I was going to miss it, although I was in pretty rough shape. After the show we were going to drive back the 4 and 1/2 hours to Little Rock for an early morning infusion.

Among the performers on the bill was Bill - Bill Medley, that is! He and his good friend Bobby Hatfield had set the music world on fire in the 60s and beyond as The Righteous Brothers. I met him when I was serving as the General Manager and Executive Producer at Dick Clark's American Bandstand Theater. We also produced Paul Revere and the Raiders, The Original Comets from Bill Halley and the Comets, Bobby Vee (Take Good Care of My Baby and many more hits), Music/TV/Movie Star and teen idol Fabian, Bryan Hyland (of Itsy Bitsy Teenie Weenie Yellow Polka Dot Bikini fame), The Chiffons, Chris Montez (Let's Dance), Gary Lewis and the Playboys and an original show I wrote and produced for Dick Clark's called 'Cruisin' 57.' Lotta' work & a lotta' fun.

On the show 'Sean Murray: Rockin' for a Cure' Bill took the microphone and said 'I hate why we're here, but I love the man. I wouldn't miss it.' Okay - cue the tears. He sat at he piano and played a solo version of the RB's mega hit 'You've Lost That Loving Feeling' which as, you probably don't know, was the most played song on the radio for many, many years. Bill quips 'I wished I'd written it!' Writers and Publishers earn the royalties for songs played on thr radio. Singers don't. That's why singers try to write their own songs and own the publishing companies.

Anyway, I opened my laptop and showed them that I had the Righteous Brother's album 'Unchained Melody' linked on my desktop and I quickly found something special for the mom, whom I had learned was from England, but had been in the States since the 60's. I clicked on a cover tune that Bill and Bobby did on that album and gave my headphones to mom.

She listened for awhile and began to tear-up. Then they trickled. The husband and wife asked me what I given her and I said that it was the Righteous Brother's version of  'The White Cliffs of Dover.' My dear UK MM friends, Lorna & Micky, Paula,and others probably know what the literal White Cliffs of Dover meant to someone from England now in their 80s.

The cliffs face towards Continental Europe across the most narrow body of the English Channel, where invasions have threatened Britain for many years. They stand as a symbol of an ever-present guard. Mom was a young teenager in England when WWII ensued.

     WHITE CLIFFS OF DOVER           
Walter Kent (music) Nat Burton (lyrics)

There'll be bluebirds over
The white cliffs of Dover,
Tomorrow, just you wait and see.

There'll be love and laughter
And peace ever after.
Tomorrow, when the world is free

The shepherd will tend his sheep.
The valley will bloom again.
And Jimmy will go to sleep
In his own little room again.

There'll be bluebirds over
The white cliffs of Dover,
Tomorrow, just you wait and see.

She took off the headphones and leaned over and gave me a tender hug. Through the magic and power of music, one song had touched her deeply. And to think she heard it, ostensibly, because I have MM. I also sent them to see the world's finest Beatle's tribute artists The Liverpool Legends, another show I worked on with Louise Harrison, George Harrison's sister.

What a great afternoon for me! Rev/Dex/Velcade working to keep me on the planet and the company of some wonderful, wonderful people.

Keep fighting!

Another S'Myeloma Award : ) - Dominator Phil Brabbs

A dummy, Phil Brabbs is not!

His blog, www.mmfordummies.blogspot.com, and his organization's Facebook site,  www.cancerkicker.org  have helped motivate and educate hundreds, no thousands, of folks battling Multiple Myeloma and other cancers across the world. Stop by the sites to see someone who puts faith and energy into action.

Currently in-between tandem Stem Cell Transplants, Phil, his wife Cassie and their young family, work tirelessly from their Michigan, USA location to show us how we can DOMINATE our foe. His bright, cheerfully friendly, and positive outlook makes him an easy pick for my latest S'Myeloma :) Award.

Keep kickin' it, Phil and thanks for keeping us smiling!

Sean

Such a Good Sport

Since I was in Little Rock much of last year being treated for Multiple Myeloma, I now find myself not wanting to miss  any of the family events that dot our calendar. 

One of things that I really love to do is watch my oldest daughter, Katie, participate in sports. She's grown up playing volleyball, soccer, basketball, softball and running track. Katie possesses a healthy competitive spirit that pushes her to excel (she's a straight A student, as well) and she loves the camaraderie of being on a team.  And she does it all with a wonderful sense of joy and fair play.

Though it's important, I'm not so much interested in whether she and her team wins. What really makes me happy is to see her having fun, working hard and being a great teammate.  It is exciting to see Katie shoot a last second jump shot or give it her all in a close relay race.

We MMers know about working hard, and we've certainly come to rely on our teammates. The race that we run has more serious implications, of course, but the attitude and drive with which Katie tackles her athletics inspires me to stay in the game, to give it my very best effort and to maintain a positive, we-can-do-this outlook. 

As she is fond of saying to me, 'Murrays don't give up, Daddy. You taught me that.'   

Well Katie, you've taught me a lot, too. I am so grateful that  you are on my team.

Today's S'Myeloma Award : )

This latest S'Myeloma Award :) goes to Karen 'Cancer Girl' for her posts from the American Society of Clinical Oncologists (ASCO) convention in Chicago. Thanks for your report and for keeping us smiling! 

http://adventuresofcancergirl.blogspot.com/


Note: The original post used an incorrect link to Karen's site. It's been corrected!

And the Winner of Survivor: Myelomaville is.........

As I walked down the dimly lighted, moon cast path towards Jeff Probes, the host of Survivor: Myelomaville, I nearly trembled at the thought of winning it all. After months of grueling, bone rattling events filled with blood, sweat and tears, the tribes had merged and I, the last man standing from the Wentangotatranzplant tribe, and Eva, the last member of the Revadexavelcamid  tribe, were vying for the ultimate prize- a Myeloma cure.

As we bravely marched into the decision area, I glanced over at the full jury box and saw the doctors, patients, researchers, biopsy techs, RNs, and caregivers that had previously  been voted off the island of misfit plasma cells. They looked simultaneously perplexed that I was one of the last two contestants and hopeful that the path that would come to be known as the route-to-the-cure, was the one that they had ventured down.  I wanted a cure, but I wanted Eva to be cured, too. Could there be a tie? Were we all on the right path? Or worse, were we all on the wrong path?

We carried the flaming torches which signified ‘continued life’ and secured them into the ring around  the adjacent Remission Pit.  The ever charismatic Probes directed us to sit in the jungle themed infusion chairs. With his best Hollywood smile, he informed us that after countless months of doing tests and medication challenges and invasive procedures and securing second mortgages, it was time to read the final lab results.

‘And the winner of Survivor: Myelomaville and the ultimate cure is….”

Ahhhhh!! That’s when a world-class, drug induced, Rev/Dex/Velcade foot cramp woke me up from my dream. Or maybe it was the scream, emitted either because I was in such pain, or because I had won, or lost, the Survivor prize-  I’m not really sure. In any event, I was fully awake at 3:00 am with no clear-cut answers.

I’m in CR, but am I cured? Jeff Probes and the cast of hopefuls were nowhere in sight. Eva wasn’t there. Maybe that was a good thing. I didn’t really want them to see me reduced to tears, furiously rubbing my treasonous foot.

Karen woke with a start, rolled over and asked ‘Are you alright, honey?’ ‘Yeah,  guess so. Gonna’ try to get back to sleep.’ ‘Good. Remember, tomorrow is the Relay for Life and you have to go pick up your Survivor t-shirt. Good night, Champ. Pleasant dreams.”    

Keep your eyes on the prize, all you friends out in Myelomaville.  I will be thinking about each and every one of you as I circle the track, arm-in-arm with my family.

Sean