When the Clock Runs Out - Play On!

Just because the clock seems to have stopped ticking, it doesn't necessarily mean the game is over.

Following is the text from my January Myeloma Beacon article:

 “So, how much time are they giving you?” an old friend from college asked me with great concern in his voice.

We had lost touch for several years, and he had only recently learned of my ongoing battle with multiple myeloma.

Ah, the classic ‘how much time?’ question.

I replied. “My doctors have assured me, with a great deal of certainty, that I will have no more than (dramatic pause)… no more than twenty-four hours a day to live my life. Only twenty-four hours a day! Why me?”

“Oh, man, I’m so sorry. Wait – very funny. You’re an idiot. Seriously, what’s your prognosis?” he shot back at me.

Okay. When someone is really interested in discussing such things, I tend not to break out the graphs, clinical study abstracts, or my PET scan images. I tread more lightly than that.

It’s not that I don’t find the survival stats interesting and valid. I just don’t let them rule my daily life.

If need be, I can cite the projected outcomes of my particular flavor of myeloma and my treatment protocols until the cows come home, but those statistics may not reflect the arch of my personal story.

Even with this difficult diagnosis, as a glass-half-full person, I fully expect to be kicking rocks around this good old Earth of ours for a good while yet. Does a positive, hopeful attitude make my prognosis any better? Maybe not, but it sure makes each day a bit easier to get through. A spoon full of sugar, as it were.

I take comfort in knowing that brilliant minds continue to work on the myeloma problem and that great strides have been made in approaches to treatment. Although a slam-dunk cure has been elusive, many patients are living longer today than they would have lived with a similar diagnosis delivered just ten or fifteen years ago. That’s something, anyway.

In short, I have no idea how long I will live. Do you honestly know how long you will live?

Remembering that my friend was a sports geek, and not being content to give him a brush-off answer, I grasped for a creatively simple analogy to help him understand how I approach the ‘time’ aspect of my battle with multiple myeloma.

His favorite sport is soccer – football to my non-American pals.  Soccer has a unique time structure. Each game is divided into two, 45-minute periods. The clock never stops in each period. When the second 45-minute period runs out, the game is over, right? Not necessarily!

You see, whenever a soccer game has to stop for an injury, a penalty, a fight breaks out, a hooligan runs on the field, or some other variety of interruption takes place, the clock keeps ticking away. But a very clever Mr. Referee keeps track of all of the bits of playing time lost to these wayward events (commonly known as ‘stoppage’ time), and then he adds the precious minutes and seconds to the end of the game.

The cool thing is that the coaches and players may have a rough idea about the amount of stoppage time that will be added, but they don’t exactly know how much. It’s the ref’s secret. The soccer players continue to feverishly battle on not knowing when the final whistle will blow. Aha!

As I have participated in the proverbial soccer game of my life, I have taken great joy in playing hard, taking some good shots, occasionally stopping the bad guys in their tracks, and sometimes even scoring some winning goals. Of course, I’ve also made some blunders, missed some easy shots, been called for some fouls, and let my teammates down a time or two. It goes with the territory of a hard-fought, no-holds-barred match. All in all, I have had great fun!

But then disaster came calling. I was diagnosed with what was boldly labeled as an incurable cancer. The second period clock ran out. The game was over. Or was it?

As shocking as it was to be told that I had myeloma, with time I understood that the referee’s clock was still ticking. He didn’t say that I was finished. My doctors didn’t say that this was the end of the match.

Even if my game is under that mysterious stoppage time, I will keep plugging away, keep trying to score goals, keep trying to lend a hand to my teammates. There is still hope, and there is still time to make a mark on the world. And as hard as life is, this isn’t the time to give up.

I pray that you will find strength, courage, and good news in 2013.   Have a good game, and Happy New Year!

 

Flying The Sometimes Not-So-Friendly Skies

So, you've decided to leave your happy corner of Myelomaville and go out-and-about on an adventure, hunh?

Travel can sometimes prove to be a daunting activity for many of us dealing with multiple myeloma. Following is an account of a quick trip that I took to San Francisco which recently appeared in the Myeloma Beacon.

Sean's Burgundy Thread

Have a Safe and Happy Thanksgiving!

   

For the latest news and information in the myeloma world, please visit the Myeloma Beacon.

New Link to the Burgundy Thread Archive at the Myeloma Beacon

Boris Simkovich, CEO of Light Knowledge Resources and Publisher of the Myeloma Beacon, was kind enough to send me a better link to my article archive at the Myeloma Beacon.

This link will allow you to see my articles in reverse chronological order of publication. For my cousin Clem, that means newest first - oldest last. Sort of like on bath night Saturday. Here's the link:

Sean's Burgundy Thread

Please, please, please don't just read my articles. Take a thorough  tour of the Beacon's website. Look at the Forums, browse the Links, Blogs, Resources, etc. Share this important site with anyone you know who may be facing a diagnosis of multiple myeloma or who simply wants to learn more about this blood cancer.

Thanks, Boris!

Myeloma Beacon Articles

A friend asked me to post a link to my articles in the Myeloma Beacon archives. Here you go:

Assorted Ramblings from Sean's Burgundy Thread

I think that I am getting a second wind to tackle this blog again. Life with one wife, two children, three dogs, and four years of cancer treatment have consumed my waking minutes. It's time to get back at it! 

Myeloma Smyeloma

Over the last four years I have 'stoically endured with a smile' (my wife's words) 16 bone biopsies and bone marrow aspirations, surgery to repair collapsed vertebrae, lots of fractures, major high-dose chemo,  and much more during my treatment for multiple myeloma. Many of you have done the same.

You'd think that I wouldn't have been nervous to have a simple dental cavity filled on  a recent afternoon in Springfield, MO. Not an extraction or oral surgery, I wasn't worried about osteonecrosis of the jaw (ONJ),  a serious condition which can lead to bone death in the jaw.  It was just a tiny cavity. You'd think that I wouldn't be nervous, BUT...

The last cavity I had was 23 years ago. Same tooth. The new cavity was seen on x-rays underneath the old filling. Was I afraid of pain? No. Afraid because the dentist eerily resembles Steve Martin a la Little Shop of Horrors? No. Afraid of the noise, the smell, the whatever? Nope.

Why was I nervous? Well, because 23 years ago, as my former dentist, a big, burly, long-maned Greek, leaned over me to administer the first novacaine injection, the little-round-stool-on-wheels he parked himself on, shot out from under him like a bottle rocket as he proceeded to poke me in my right eyebrow with the needle. Yep. I can still hear him scream like a schoolgirl.

When my wife and I began going to a new dentist several years ago, I shared this story with the hygienist who laughed with me and assured me that nothing like that ever happened at their practice.

As she walked toward me with the tray full of dental implements to prepare for the check-up, she tripped on, yes, the little-round-stool, and showered me with picks and files and explorers and cinnamon polish, and the like.

The only thing that happened today was my fleeting panic when the dentist muttered: 'What is wrong with this chair?'

Somewhere there is a Sean Murray voodoo doll, sitting on a little-round-stool, with needles stuck in its stoically smiling mouth. I wonder if it has myeloma, too.  

Smyeloma graphic (c) Sean Murray 2012

Hello & My Recent Myeloma Beacon Article

Happy February!

It's starting to get cold here in the Ozarks of southwest Missouri. Up until now we've been averaging temperatures 20 degrees warmer than normal. No snow to speak of and much to the chagrin of my teacher wife and two school-aged daughters, no snow days off from school!  Not complaining, mind you, it could change any minute!

I've attached a  link to my most recent Myeloma Beacon article Sean's Burgundy Thread: Just This Week .
If you are interested in all-things-myeloma, the MB is a great site to visit.

As some of you have asked, I'm also re-printing the article as follows:

Sean’s Burgundy Thread: Just This Week

 Published: Feb 7, 2012 at the Myeloma Beacon    www.myelomabeacon.com

Just this week, an acquaintance of mine passed away due to complications from his long-running battle against multiple myeloma.  He was treated at the same out-of-state myeloma clinic at which I was treated. We occasionally ran into each other at the local cancer center where we both received maintenance chemotherapy.

He was fifteen years my senior and had a lot of medical problems aside from myeloma. Ultimately his kidneys were destroyed, he was on dialysis, his heart was diseased, and he had trouble getting around most days. While his condition dictated that he could no longer go hunting or fishing or walking in the woods that he loved so much, it was okay, though, because he quipped that he was ‘filled-up with enough outdoor memories to last two lifetimes!’

Although he had so much going against him, I never saw him without a huge, friendly grin on his face that broke into a hearty belly-laugh now and then. The oncology nurses painted the same picture of him.  Their sadness at his passing was profound.

I knew that he was in pain, but he never seemed to pity himself and he never failed to show concern for how I was doing. He told me to stay strong and to ‘enjoy today, because today is what you have and you don’t want to waste it.’

I didn’t know him outside our short visits at the infusion center, but his courage, his humor, and his thousand-watt smile will stay with me forever. I’d wager that his was a life well lived and that there were people all over the place who felt a connection with him.

He was much bigger than his myeloma.

Just this week, I ran into an old friend who had been a performer in some live musical shows that I had produced several years before. She was wildly talented and exceedingly bright, and it was always a great joy to be around her. In the busyness of life, we’d lost contact.

She was in town this week serving as the coach of a visiting high school’s girls basketball team that was facing my freshman daughter’s high school team.  Watching her work, it was obvious that she had taken the same passion, exacting skill, and determination that she possessed as a top-drawer entertainer, into the coaching and teaching fields. It was heartwarming to see the love and respect that her kids had for their coach.

Before the game, I caught her attention and waved hello to her. She smiled, came over, and gave me one of her patented bear hugs. The last time that I had an opportunity to visit with her in person was many months before at the benefit that her school had created to show support for her fight against breast cancer.
At the time of her benefit, she was sporting the proverbial ‘cancer uniform.’ You probably know it well: ball cap or scarf, no hair, gaunt appearance, fear etched deeply in her eyes. When she weakly hugged me, tears came to both of us.  I was afraid for her. All we could do was to say that it was going to be okay. I didn’t know if either of us believed it.

Breast cancer wasn’t the only difficult period in my friend’s life. She has overcome other challenges that would undo most of us.  But through her subsequent struggle with cancer, I have seen an amazing faith in God emerge that has buoyed and comforted her husband and young children, her friends like me, and her community. She has touched the lives of many people undergoing cancer treatment.

She recently announced that the doctors have declared her to be cancer free.  My dear friend is much bigger than breast cancer!

When I was diagnosed with myeloma and eventually understood the sobering nature and reality of facing cancer, I remember sitting down with my wife and saying that I wanted to be able to look back on our journey and say that we did our best in fighting it, that we would let the experience only strengthen our family bond, and that we would live with dignity, courage, and faith, no matter the outcome.

Just this week, I was reminded by one friend who passed away and by one friend who lives on, that we are not defined by cancer.  Multiple myeloma may someday take my life, but it does not own me. The caption of my existence will be the strength of my character, the depth of my relationships, my willingness to reach out to others and show compassion, and my ability to stand on my faith no matter what comes my way.

Don’t forget, you and I are much bigger than myeloma ever will be.

Happy New Year!

Happy New Year 2012 out there in Myelomaville!

It sounds like a good year to hand multiple myeloma its walking papers. I am tired of having to say 'farewell' to the myeloma friends that I've made across the world. Maybe this is the year that will bring remarkable breakthroughs in the fight against cancer- I pray that it is so!  I will NEVER give up! 

Here's a link to my latest Myeloma Beacon - Sean's Burgundy Thread article. And make sure, MM patients and those curious about what I am battling,  to take a look at some of the other columns and the up-to-the-minute myeloma news and information that the Beacon presents on a daily basis.

God's Blessings for a safe, healthy, joyfully exciting year ahead! Keep in touch!

Sean

Myeloma Christmas Memories

Christmas is just around the corner! I want to share a link to my December  Myeloma Beacon article which talks about how different my Christmas experience was when I began my myeloma journey three short years ago.

Happy Holidays and an early Merry Christmas to all out in Myelomaville!

Marines and Multiple Myeloma

There have been some rough spots during my last three years of treatment for multiple myeloma, but when it gets particularly bad, I think of a short-list of people or groups whom have shown extraordinary courage under fire, proverbial and otherwise. 

I remember other cancer patients (including my parents) whom have quietly shown me that there is no disgrace in being afraid in the midst of adversity. They've shown me that it is possible to face difficult times with dignity and grace; that to ask for help and understanding is not a weakness; that to reach out and help another person in distress, even while facing my own pain and uncertainty, is noble. They have taught me how to march forward.

Today in the United States we celebrate and remember the 236th Anniversary of the founding of the U. S. Marine Corps. 

I have known many very fine Marines in my lifetime. Men and women, Generals and Privates, active duty, retired and reserves. Wet-behind-the-ears youngsters just out of high school, college graduate professionals, CEO quality senior officers, family members, neighbors. Some I like personally, some I don't, but U.S. Marines one and all.

Almost to a person, they abhor war. Like me, they prefer peace. They have made a choice to put their lives in jeopardy to protect, promote and preserve the freedom of our country and for others around the world.

I have met Marines with myeloma. They have shown me how to summon a personal strength from within to fight and keep fighting against this cancer. Some have said that the duel with myeloma is scarier than conventional warfare, because the fighting is internal. You can't look myeloma in the eyes - you can't reason with it. You can't sit at a negotiating table and vie for compromise or surrender.

I view the battle with myeloma as a that - a battle, a war. Myeloma is a terrorist, an aggressor. My job is  to wage the best campaign against myeloma that my team and I can muster. As I have said before, myeloma is willing to take everything I value and hold dear from me. I won't sit idly by, because my time is running out.

Please, these thoughts are not intended to spark a debate about Marines or policies or anything political. I'm just sharing a bit about a special group of people whom have influenced me in my joust with myeloma.

Most importantly, Semper Fi and Happy Birthday, leathernecks! Thank you for what you do.

Myeloma Institute Treats Its 10,000th Patient

Hear ye, hear ye!

Congratulations are in order to the University of Arkansas for Medical Sciences' Myeloma Institute  for Research and Therapy (MIRT) for hitting the milestone of treating its 10,000th multiple myeloma patient. Since MIRT's founding 22 years ago, patients have traveled to Little Rock from all 50 of the United States and more than 50 different countries.

I credit Dr. Barlogie, Dr. Nair, and the stellar team at MIRT for keeping me around to enjoy more time here on this Big Blue Marble of ours! Thank You! 

In case you didn't catch the link   

PLEASE CLICK HERE!

(Thanks to the UAMS News Service for this link)