Sean’s Burgundy Thread: Stoppage Time
“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!
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 .
Sean,
I like your soccer analogy. (I never understood why the time keeping was so secretive).
I find that most people who ask about MM and my prognosis are really not interested in hearing too much detail. They hear "cancer" and in their mind it is either a death sentance or you will be cured. So I give them very basic information. I tell them that I have a non-curable but treatable form of cancer. I draw the analogy to Diabetes. I tell them that I am in remission but must continue to take my meds similar to a diabetic. If I stop the disease like diabetes will come back and would be serious.
I avoid discussions of possible relapse or becoming refractory to the medications because that is not something they really want to hear. Most people want to hear that you are going to be ok. I really don't want their sympathy anyway. I want them to treat me normally, so I stay with the simple explanation.
Ron
That soccer-ref analogy was well put, Sean. Mind if I use it?
Well said!
Thanks for explaining the 'stoppage' issue in soccer! We were watching the World Cup last time it was on , and I found that to be confusing. Not like ice hockey, where the three periods are exact, and then it can go into overtime etc....I only wish there was NHL hockey this year!
But I like the analogy, and it's great just to carry on and not worry about the end of the game, whenever that is! Hopefully not for a long time, anyhow.
Thanks for your timely comments....giving this to my husband to read -
he is getting discouraged with his new trmt plan and maybe this will rally him back into the game
That's a great analogy Sean, and thanks for explaining "stoppage time". It's true that you can learn something new everyday. Unfortunately, in this hypothetical game, our team is down a point so we have to hope that we can kick one into the goal before the ref blows the whistle!
What a great analogy to soccer! Like other readers, I also didn't understand time "stoppage" in that game. Your column encourages me, this morning, to keep my hopes up while fighting a nasty respiratory illness over the past two weeks (including a trip to the ER on Christmas Eve night due to fever).
Took me a while to digest the difference between something that is life threatening and incurable, rather than simply terminal. And of course, life is terminal anyway.
I'd like to think I'm a long way from the end of the second half - frankly I didn't really think we'd reached half time. But any player can be pulled off the pitch at any time, subject to the whim of the coach.
I use the proverbial (at least in England) "hit by a bus" metaphor. The only problem with the myeloma bus that makes it different from some other buses is you know, with some confidence, that if it has hit you once then it will drive round the block and hit you again someday.
I sat in a school nativity performance recently, wondering darkly if it would be the last one I'd get to go to. But it occurred to me that of all the many parents there, if one of us doesn't make it to next year, chances are it won't be me. It's just the other unlucky soul is in blissful ignorance right now.
For now you and me will just keep making the plays, and enjoying the stadium atmosphere. Score some goals, Sean.
I wonder why people react to cancer patients the way they do. Most people I know don;t ask, even family. It took me quite a while to get use to it. It has taught me to show more concern for my fellow humans. I always ask & listen. Judy
Thank you for your thoughts, everyone. Sorry for the delay in my acknowledgments, but I have been sidelined by a rather nasty case of the flu. Suppressed immune system + a virulent flu bug = a not-so-cheery January. But now it's time for me to get off the sidelines and back in the game! I hope that you all are well.
Hello Sean! I love your columns. Always gives me a better perspective on my own life. Sorry to hear you were sidelined. Very happy to hear you were able to get back into the game. Love and hugs cousin!