Thursday, January 31, 2013

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!


Mrs. Natalie Wilson said...

Very well written. My dad has MM. I will pass this on to him.

Sandy said...

Somehow I missed this posting with some creative responses to such (IMHO) demanding and possibly insensitive questions... would anyone ask that question of just the average person, a friend of yours, let's say?

Hey, Buck, how're ya doin'? How long ya got? OR...
Sally, good to see you. Looking a bit peaked... doc give you any idea how much longer you're gonna be around?

Truly... I prefer to think of it like a soccer game. Thanks!

tccomments2013 said...

dear sean,

divine intervention must have led me to this brilliant post of yours just when I needed it. since hugh died suddenly in may of this year - while he was in a robust remission from tandem SCTs, my life has changed from being a full time advocate for him, as well as one for myself after being dx'd with ST IV metastatic breast cancer, just 2 years into the battle with myeloma that hugh was facing happily, i achieved remission also (AKA as NED - no evidence of disease, so we were able to celebrate the hell out that, living life well and fully, some days of great new adventures, others just enjoying the gifts of ordinary days. after hugh's death, a short period of only 8 weeks, I was dx'd with another cancer - uterine - which was deemed serious enough to now require 2 modes of radiation, then a full course of chemo to follow. I was devastated,especially without my beloved to be by my side. I know that many dear friends and family wonder what the ultimate outcome will be - will I live to see the day that I have kicked this new cancer to the curb (by the way, it has nothing to do with my breast cancer) and celebrate with re-newed life and purpose? so far, no one has asked. but if they do, you've certainly provided me with a good blueprint of how to respond - not necessarily related to soccer, but having to do with something more relevant to me. one thing I know for sure - grief is the boss and will have it's way with me - it is a necessary process, part and parcel of the means to dispel overpowering sadness and loss to be able to move on through life that gradually and somewhat dispels the oft times of feeling paralyzed to allow our friend, gratitude, to assuage the sadness, and be receptive to being comforted and feeling more alive. my challenge is solely focused on doing all I am able to mindfully stay in the long game of treatment, recover, and be able to have a full and purpose driven life, to allow myself one day to see all the reminders of hugh's and my fabulous, loving, and joyful time together (46 years), and be able to smile at all the memories we made together. then move forward to make new memories that honor our love for one another, the plans we had to pay it forward and lend a hand to help others, and share our story, both heartbreaking, and heartbreakingly beautiful.

whenever I am feeling positively and powerfully that I WILL live I will feel that same thing for you, sean. once a good friend and also a cancer survivor of the "uncurable" ilk, suggested something I thought was marvelous. she said, let's do this gig together, lets just hold each other tight, and hang on for dear life!" dear life - I like that, don't you?

i'm glad I found you tonight. it's been a long day of slugging rats in the gutter, but your post lightened things up and was a real inspiration. to life, my friend, to LIFE!

Karen, TC

Princess Scribe said...

So happy to have discovered your blog; I'm newly diagnosed. Keep up the great words!

Anonymous said...

Dear Sean
How are you? Please reply or post something

Robert S Zeiders M.D. said...

Your most recent column struck a real accord with me. I am a 74 year old physician with multiple myeloma x 2 years. Since my autologous marrow transplantion I had looked forward to four European cruises, thinking why not go out with a bang. The first two were complicated by pneumonia, the third by dysentery, and the last be severe bronchitis followed by asthma. What is it about joyous occasions and myeloma?