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Anecdotal Evidence Supporting Increasing Median Life Expectancies Among Multiple Myeloma Patients

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Anecdotal Evidence Supporting Increasing Median Life Expectancies Among Multiple Myeloma Patients

Median life expectancies. I have always been fascinated with this topic. It all goes back to that almost primal moment when you first hear those words: “You have cancer.”

From that moment on, for most of us, it is all about the prognosis. Doctors hate to give it. If the news isn’t good, patients hate to hear it.

Human nature sets in at this point. Some people are “the glass is half empty” types. They tend to process data, like median life expectancy numbers, as: “That’s how long I have to live.” Others are “the glass is half full” and sometimes more competitive types. They immediately decide: “I’m going to beat this thing… I’m going to live longer than this damn doctor tells me I will!”

What no one is hearing—often because it is never clearly defined or explained—is the term “median life expectancy.” The doc isn’t saying (at least I hope not!) “you are going to live four years.” The doc is saying “The average patient, diagnosed with your stage of this cancer, lives four years.” Better, but that still isn’t correct. Median isn’t the average. Median means the middle. If a multiple myeloma Stage II patient’s median life expectancy is four years, that means one half of stage II patients will die before the four year period ends, and one half will live longer. Some will live much longer.

I am definitely and definitively one of those “half full—competitive type” patients. I want to know the numbers so I can beat them! But I also like to be realistic so I can plan for my family’s future. For example, diagnosed at age 51, it wasn’t unreasonable for me to quit worrying about saving for retirement. Once my condition was stabilized, we created and executed a plan to sell our more expensive home, move to a warmer climate with a much lower cost of living, and adjust our life style. I no longer had the energy to pound ten and twelve hours a day as a top producing real estate agent. Combine that with a bad real estate market that has only gotten worse and, I must say, it makes us look pretty wise right now! My wife went out and got a different job—with benefits—and I began to write. My ever present bone pain, and the prospects of constant chemotherapy and the likelihood of a stem cell transplant in my near future, makes working difficult and unpredictable for me.

So I found my new life’s calling—writing. I began to research myeloma, travel to conferences, interview myeloma docs and researchers, and write, write, write.  My first book, Living with Multiple Myeloma,  was published last year.  A revised, updated version will be available soon.  And I am almost finished with the first draft of my second book about cancer.

It is from this perspective I will share my anecdotal evidence and observations about the unreliable and inaccurate median life expectancy numbers most multiple myeloma patients face when they are diagnosed today.

But not today! Today I need to continue working on my second book so I can hopefully pay the bills—someday! I will conclude my essay tomorrow.

Feel good and keep smiling! Pat