International MPN News, Science & Opinion

The numbers game


THE NUMBERS GAME 

 by Beatrice Larroque

How long am I going to live? That is the quintessential question!

That is the question that haunts all of us once diagnosed with Myelofibrosis, and since that fateful day, my life has become a number game:

How old will my boys be if I live … long? How old will I be if I live … long? What about if I live … long?

I must say, I am becoming quite good at mental math!!

Long before I ever knew about MPNs, I was going to live old, very old, well into my 90s, according to a friend who read my palms once.

But one night, my computer, very indecently, told me I only had 3 to 5 years to live.  That was terrifying, and definitely not acceptable! I was single and my kids were 7 and 10. I obsessively kept adding their ages to these ridiculous numbers, as if the result would somehow be different… but they were just as unacceptable, time after time again. So, at my next doctor’s appointment, I told him he had to keep me healthy and functioning for at least12 years, long enough to put my younger son to college.

“I can’t do that!” he said, “there is nothing I can do, it will happen or it won’t!” “Nothing??” I asked, horrified, “No medication, no diet, no exercise,NOTHING???”

“No, nothing,” he replied

Well, that was definitely NOT acceptable!!

Shortly after this terrifying news an MPN specialist at Mayo Scottsdale, Dr. Camoriano, thought my life expectancy was closer to 6 to 8 years, but added that he had a patient that had been living with MF for 20 years.

That was more like it! 20 years it would be then!

Now, that was…7 years ago, so… 1 more year? No, sure I have more than 1 year left in me! And what about the lady that had 20 years with MF? And how many more years did she live since?

But then, I resumed counting again, you know, adding up numbers in my head, again. In 20 years, my boys would be out of college and starting their lives. I want to see them in love, I want to babysit their kids, I want to see them happy…

There is so much I still want to do, I WANT TO LIVE!!!

So, what will it be? 8 years? 20? More?

I know, I know, nobody can tell us how long we are going to live, statistics do not tell the whole story. “Statistics outline probabilities – they cannot limit possibilities,” said someone by the name of Stephen J. Gould who survived Mesothelioma for 20 years, an incurable cancer with a median mortality of only 8 months after discovery.

So, if this is a challenge, I’ll take it! I will play this number game, and I will prove everyone wrong!

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© Beatrice Larroque and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Beatrice Larroque and MPNforum.com with appropriate and specific direction to the original content.

Comments on: "The numbers game" (3)

  1. I was diagnosed with PRV 10 years ago and still going along well. Whilst we are all scared that one of the hazards will get us (heart attack, clot etc); it’s important to actively manage the condition to give you the best results. There is no reason why we can’t live a full and fruitful life!

  2. I play the numbers game too having PV and kids (9, 14, 18), wanting to see their milestones, and always calculating how old they would be if I make it this many years or that many. Thanks for putting that maternal longing into words.

  3. Barbara Kurtz said:

    I can’t begin to imagine the loop in your head. Thanks for taking the time to tell your story.

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