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I am a statistic. July 25, 2009

Posted by PAS in cancer, research, survivorship.
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CT scan showing an intracerebral hemorrhage.

Image via Wikipedia

sta⋅tis⋅tic noun. A numerical fact or datum, esp. one computed from a sample.

I am a statistic.

In July, 2000, I had an intracerebral hemorrhage of unknown origin. (Note: the photo here is not my brain scan!)

The docs believe it was most likely the result of a challenged arterio-venous malformation (AVM) deep in my brain. The AVM began to leak, and hemorrhaged into the left parotid lobe of my brain. But we’ll never really know, since the only definitive diagnosis is via surgery. I didn’t have surgery; my bleed stopped on its own and I began a recovery process that seems like it was only yesterday.

Over 700,000 people in the US suffer a stroke annually. Out of every 100 people who have strokes, only 15 (some stats say as few as 13) of them are hemorrhagic (bleeding) strokes. 10 of those 15 people die within the first 24 hours after the bleed. Two of the remaining five people die within 30 days of the original bleed. And of the remaining 3 survivors, two will need help with activities of daily living (ADL) such as dressing, grooming and eating, for the rest of their lives. Only one of those 15 hemorrhagic stroke survivors will show minimal to no signs of the stroke and appear to have completely recovered. (statistics via:

http://www.theuniversityhospital.com/stroke/stats.htm

http://stroke.about.com/od/strokestatistics/a/StrokeStats.htm

I am that one in 15 bleeding stroke patients out of 100 stroke patients who appears to have completely recovered. It was my first brush with being a statistic…but not my last.

In 2004 I became one of that year’s group of over 115,000 people diagnosed with colorectal cancer. I became one of the 10.9% of people with a colon or rectal cancer diagnosis who was between the ages of 45 and 54. I became one of that select group of patients diagnosed with Stage IV disease—rectal cancer already metastasized to my liver. With that diagnosis, I became one of the 19% of colorectal cancer patients who are diagnosed after the cancer has already spread to distant organs, and the group of patients of whom only 9.8% manage any type of long-term (5 year) survival after diagnosis. Statistics via: http://colon-cancer.emedtv.com/colon-cancer/colon-cancer-statistics.html

In the last five years I’ve also become a statistic in other ways:

  • I’ve become an ostomate.
  • I’ve become one of those Stage IV patients who’s been treated with HAI pump therapy, and one who has survived past the median 3 years post-HAI pump insertion without recurrence in my liver, although I didn’t make it past 21 months progression free survival.
  • I’ve become one of the rectal cancer patients for whom recurrence at the original tumor site was an unfortunate fact.
  • I’ve passed the median survival time post-diagnosis (now up to 30 months for stage IV patients), and just closed the book on month #63.

What I haven’t done yet is die…I’m working to revise those statistics.

But revising those statistics doesn’t mean I can ignore statistics, or only pay attention to the happy ones of which I’m a part—the numbers of people who have had an extended period of NED, who have lived three years without recurrence of liver mets, who have overal survival since diagnosis of more than five years. I can’t be part of the happy statistical group and ignore the other groups—all of these numbers are part of an equation. And I can’t embrace the popular hyper-positive rallying cry of many cancer patients, “I am NOT a statistic.” My life continues because I AM a statistic, one of the numerical facts and individual datum who comprises the sample of rectal cancer patients alive in the US today.

Support, research, money and focus on better care and awareness of colon, rectal and anal cancers is all about money and time—and that is all about numbers. So I am proud to stand up and be counted, be one of the numbers who can help put a face on rectal cancer.

What about you—in what way are you a statistic? Can you embrace being a statistic for the greater good of awareness and increased research and funding? Will you stand up and be counted?

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Comments

1. azahar - July 26, 2009

Sure, count me in.

I think my doctors really don’t know what to do with me because my cancer isn’t following the usual protocols. Mets keep popping up and disappearing after short bursts of chemo, apparently putting me in that very small group for whom chemo might be “curative”.

On the other hand, they’re just guessing about this and I half suspect that my oncologists can’t understand why I’m still alive, so they keep treating me like “dead woman walking” and just sit back to see what will happen next.

I’m sure that they would be happier if my illness was behaving in a manner that would comfortably fit into one of the main statistical groups. But I’m happier (so far) being an exception to what the numbers have to say.

gaelenscafe - July 26, 2009

I think ‘mystifying oncologists’ is a worthy practice, Az!


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