I received a disturbing follow-up email from a reader last week.
She had been searching for help to find a therapy that might work for her brother with multiple myeloma.
Unfortunately, her brother died before he could even start therapy.
Last year, a member of our support group here in Florida recently passed away after being diagnosed a short six months earlier.
Two of many examples which help illustrate why median life expectancy statistics for multiple myeloma patients are unreliable and misleading.
Let me explain.
I’m another example. At age 48, I was a real estate agent working in Wisconsin. While completing a contract called an offer to purchase, my buyers asked why my hands were shaking.
I had never thought about it, but they were right. It became more and more difficult for me to “fill in the blanks” on contracts as the years went on.
Four years later at the age of 51, I was diagnosed with multiple myeloma. Based on the extensive bone damage that my MRI and other tests revealed, my specialist at Mayo Clinic speculated that it had started a number of years earlier.
“How many years earlier?” I asked. “It’s impossible to tell.” he responded.
I then described how my hands–and handwriting–had become so unsteady as early as four years ago. Could that have marked the start of my myeloma? “Very possibly.” he replied.
Now let’s switch gears. At every support group I visit around the country, one or more survivors describe how they were diagnosed completely by accident. Completely without symptoms, these folks describe how their doctor noticed how something “wasn’t quite right.” with their blood work, which was drawn for another reason–or as a result of a routine physical.
So explain to me how any multiple myeloma patient can use median life expectancy statistics to help gauge how long he or she may live?
We are talking about a variation of up to five years–or more–between when each of these patient’s myeloma started.
Yet everyone’s stats are tossed randomly in together.
So if my myeloma did in fact start four or more years before my diagnosis, and I have now lived almost five years longer, does this mean I have already lived almost ten years with bone marrow cancer that, on average, is supposed to kill me in half that time?
THIS IS CRAZY!
And I haven’t even addressed how patients who are diagnosed in their 80′s are tossed-in together with patients who are diagnosed at age 42…
I understand that “median life expectancy” means one half of patients live longer than the median, and one half live less.
But longer or less than what?
I hope you can see where I am going with this by now.
WE ARE NOT STATISTICS!
No one can tell us with any certainty how long we are going to live–whether we have multiple myeloma or not.
Accepting our mortality–and then learning to live the cliche’ “one day at a time”–is the key to getting our life back!
Statistics are just guidelines. They point to trends.
I’m now 55 years old. Yes, based on statistics, it is unlikely that I will live to see my 65th birthday. After all, that would mean I had managed to live with multiple myeloma for almost 20 years.
Unlikely, but not impossible.
But why worry about something I can’t control? I feel pretty darn good today–despite still being on RVD chemo mid-cycle.
I can still write, take a walk in the warm Florida sun with my wife and our “Island Dog” Finnegan.
And that’s good enough for me!
So statistics be damned! Try to make the best out of each day.
And don’t forget to feel good and keep smiling! Pat