Not As I Pictured - A Film by John Kaplan

I was recently leafing through the Summer/Fall 2011 issue of the LIVESTRONG  Quarterly magazine and ran across an interesting article brief in the Strong Stuff section entitled 'Through a Lens: What Survivorship Feels Like'.

The article highlighted Pulitzer Prize winning photographer John Kaplan's documentary film, Not As I Pictured , which chronicles the courageous, take-no-prisoners  tale of John's battle with lymphoma.  The up-close-and personal film is interspersed with numerous examples of his compelling photography, quick wit and gritty determination to beat his disease.

As a creative person, I particularly appreciate the style John has used to tell his inspiring story.  Through the advent of today's social media,  I was able to share my thoughts with him and he immediately got back in touch with me. He is the real deal, as they say, when he says that he wants to help others going through the cancer odyssey.
  
As an interesting aside, it turns out that John's oncologist and lymphoma specialist, Dr. Jay Lynch, is an old friend of mine from high school in Virginia. Together, John and Jay make a formidable pair.

Visit John's website, Not As I Pictured , to learn more about this project and to find out when the film will appear on your local PBS television station's schedule.  You'll be glad that you did.

To my fellow MMers: if lymphoma wasn't enough, John is well acquainted with multiple myeloma, as his beloved dad bravely fought MM several years ago.

Stay well and stay connected out there in Myelomaville!

News from the Paris Meetings at the International Myeloma Workshop

Bonjour to all of you out in Myelomaville! That means 'hello!' to my friends down at the 5 & Dime.

Thanks to the dedicated folks at the International Myeloma Foundation, you can watch an exciting, hopeful, helpful internet video presentation  from the 2011  International Myeloma Workshop  meetings taking place in Paris this week. C'est magnifique!

This presentation addresses some of the 'novel agents' (cool new drugs) being used in the war against Multiple Myeloma.

If you have Myeloma, or you know and love someone battling this difficult blood/ bone marrow cancer, by all means, watch this presentation.

And as always, check the Myeloma Beacon  for the latest news, resources and information breaking in greater Myelomaville, where amazing things have happened in the last 10 years!

You ain't gettin' rid of me yet! Au revoir! That means 'see ya;' to the guys still hanging around the 5 & Dime.

Sean

A Prayer for a Stranger

I stopped by the local pawn shop this morning on a mission. I hadn't been to one in probably 20 years. At that time I was looking to pick up some sound gear for a band I was helping. Today I was looking for another Wii gaming system to stream Netflix movies to one of my TVs. I bought one, it didn't work and, even though the store had an as-is no return policy, they gentleman kindly let me exchange it for another one, which does work. What does this have to do with myeloma you might ask?

Well, nothing. But, with apologies to Paul Harvey, here's the rest of the story.

I'm somewhat garrulous and have always enjoyed talking with people, friends and strangers alike. They certainly don't get much stranger than me! Anyway, at the pawn shop, R. and I talked about several things. It turns out that he's originally from Bentonville, AR the home of WalMart and it's founder Sam Walton. R. grew up knowing Sam and went to school with some of his kids. What's this have to do with Myeloma?

Well, did you know that Sam Walton passed away in 1992 after battling Myeloma? He donated significant money to help establish The Myeloma Institute for Research & Therapy at the University of Arkansas for Medical Sciences in Little Rock. This is where I and thousands of folks from 50 different countries have been treated over the last twenty or so years.
 
Anyway, that's not where I'm heading with this post. It seems that R.'s wife has been fighting cancer for the last three years and it's been rough. It's apparent after talking with him for a scant few minutes that R.is a very decent, kind and compassionate human being. My heart immediately went out to him as the concerned caregiver of a woman he loves. You all know what that is about.

I'm asking that in the middle of all of your concerns, that you'd take a second to think a kind thought, say a prayer, send a good vibe, whatever you believe works, to R. and his wife, E.R. I believe that it helps.

Thank you for caring! Keep fighting!

Sean

PS- R. If you visit this site, thanks for sharing your book with me. You and E.R. have created some beautiful, thoughtful poetry. My warmest wishes to you both.  

In a Flash!

If you are like me, you can probably think of instances in your life when everything seemingly changed in the lightning flash of a split second.

Maybe it happened when that one-in-a-million girl eased her way  into the crowded room at a party. Your eyes met, she mesmerized  you with a dazzling thousand watt smile, the world around you ceased to exist and you were instantly made slave to her every beck and call. In my case, I've been under the magical spell of my wife for the last twenty or so years - and I've loved every minute of it!

Or maybe your life changed the moment you heard your newborn cry for the very first time. In ways too astounding to contemplate, you knew that an amazing adventure lay ahead of you.

These quick-change moments aren't always happy things, though. In the matter of a few seconds, a family is devastated because of a tragic automobile accident. A soldier, wearing a crisp dress uniform, steps onto your porch to tell you that your son has perished in war, bravely defending those unable to defend themselves. A call from your Grandma comes in the middle of the night to tell you that your beloved Granddad has passed on.

'I'm sorry to tell you this, Mr. Murray, but I believe that you have cancer. And, unfortunately, it looks like it is an incurable cancer of the bone marrow called Multiple Myeloma.'

I looked over at my wife and her thousand watt smile was gone. We were facing a disease that neither of us had even heard of.

Myeloma Youreloma - What's in a Name?

Lizzie, my six year old daughter, visited me in Little Rock during my treatment for Multiple Myeloma in the Summer of 2009. She asked me 'How is your 'eloma' doing, Daddy?' My 'eloma'? Oh,  I get it. I scooped her up in my arms and said 'My 'eloma's' a lot better now that you and Katie are here! '

It was the first time they'd seen me without hair and a mustache and certainly the first time they'd seen me with three strange tubes dangling out of my chest. Shoot- they'd never even seen me with two tubes sticking out of my chest!

And because my white blood cell count was bottomed out at 0.0 x 10^3/u L (translation: just about no white blood cells on the job - where's my bubble?) I had to talk with them through a bright yellow and white face mask.

The night before they visited, Lizzie told me on the phone that she was afraid to see me without hair, that she might not recognize me. It broke my heart that my kids, both adopted as orphans in China, had to worry about their dad being really sick and having to live away from home for a long time. But in Lizzie's magical everything's-going-to-be-okay way, she ended up rubbing my head for good luck and asking if I could put root beer into my port tubes. I wish! 'Daddy, what happened to your eyebrows? Do you still use shampoo? Did those tubes hurt when they put them in?' Well, no honey,it didn't hurt at all. They gave me a little shot.' Yes, they gave me a shot when they shoved a catheter into my jugular vein and sewed the port into the skin of my chest. Just so that you readers know - it didn't hurt. Really!

Things haven't been easy through this struggle, we've fought very hard to keep going. But never harder than when I remember that I'm not just some guy tackling this disease. I'm Katie and Lizzie's Daddy. I'd do just about anything for Katie and Lizzie's Daddy. Those kids deserve it.


It's never been all about me. This disease has affected everyone that loves me. I may have the diagnosis, but they, especially my wonderful wife, experience the fear, the uncertainty in ways that I can't imagine. I'm still standing because a lot of people have rallied around me. You folks living with cancer and dealing with other difficult situations know exactly what I mean.

Lizzie and Katie, I'm sorry to say that Myeloma is, well, Youreloma, too. But we're going to get through this together, Kiddos. My prayer is that one day we'll be able to say Bye-eloma to Myeloma. In the meantime, we're going to keep dancing and singing songs and baking chocolate chip cookies - with extra chips, of course, just the way we like them!

Let the Blog Begin! or There's a Monkey on My Back

It was Tuesday, November 25th, 2008 at 9:45 pm and I was laying on the space-aged sliding table of an MRI machine at the University of Arkansas for Medical Sciences in Little Rock. My claustrophobic,  two hour long joyride, complete with that infernal BANG, BANG, BANG-ing noise,seemingly delivered by an unsupervised barrel of monkeys armed with ball peen hammers, had mercifully ended. What normally might have been 'no big deal' was made infinitely more difficult because I was experiencing excruciating pain in my bones.

A young doctor (not Doogie Howser young, but likely half my 49 years) came into the room to tell me ‘We need to admit you to the hospital tonight because of your back problem.’ ‘My back problem?’ ‘Yes. You have a collapsed vertebrae at T4, there are bone shards and a tumor compromising  your spinal cord and if you fall down or turn the wrong way at the wrong time, you might paralyze yourself from the chest down.’

Oh, THAT  back problem.  No wonder a heating pad and a fist full of Aleve hadn’t  given me any pain relief.

Sheesh! It was just three weeks earlier that my GP had calmly told my wife and me ‘You might have cancer- but don’t quote me. We need more tests.’   Unfortunately, he was right. And above and beyond an eventual diagnosis that included the word ‘incurable’, it now sounded like a sudden attack of my natural klutziness might lead to unimaginable problems. Stop this not-so-merry-go-round, I want to get off!

Fast forward to today. It’s been a remarkable sixteen months and [SPOILER ALERT]  I’m not paralyzed and my incurable bone marrow cancer is in remission. The struggle continues, but there is HOPE! And to tell you the truth, my team and I are aiming for nothing less than a cure.

Myeloma Youreloma is designed to answer some of the questions that my friends, family, and unsuspecting internet travelers may have regarding Myeloma, my personal trek through Myelomaville, and more.

There are some decidedly cerebral, exactingly detailed Myeloma blogs cast out across the net - this isn't one of them! I can’t promise that I’ll spell everything korrectly or offer a daily update, but this will be an honest attempt to share my thoughts, as  ill-focused and silly as they might be.

Feel free to participate in this process, yell at me, beg for me to stop, ask questions, bribe me with apple pie, do whatever you'd like. By stopping here, you are now an honored visitor to the village of Myelomaville. And I need your help, for as they say, it takes a village to raise a Sean Murray.

Welcome to the Village!


Sean 'trying hard not to be the village idiot' Murray

Illustration (c) Ariel Schrag