Robert and Phyllis Heller
In the business world we're often told that Figures Don't Lie, but that Liars Can Figure. While that may be true in some scandalous incidents of corporate wrongdoing, we who are cancer advocates also know that while medical statistics don't lie, that they don't always portray the picture in a way that is most meaningful to the average patient.
My wife, Phyllis, was diagnosed with advanced (Stage IIIB) multiple myeloma in May 2003. The attending oncologist told her at the very first meeting that the 2-year overall survival (OS) rate was 40% and the 5-year survival rate was only 20%. To have the prognostic stats presented in such a manner was devastating. I was fairly good in math when I was in high school and although I can't remember a cosine from a tangent, I can rationalize what 40% means as a part of a whole.
So I tried to explain to Phyllis that what she was being told was a simplification of the survival statistics that amounted to an arithmetic mean average. She was distressed, assuming that 4 out of 5 myeloma patients would die within five years and that her chance of surviving more than 5 years was but 20%. It was then that I explained that these numbers took in all patients who ranged from very ill when diagnosed, to those who were only slightly ill. It included patients of differing age, physical status prior to diagnosis, and additional complications and prior conditions.
When you look at the raw data you see a continuum from those dangerously ill and previously undiagnosed patients who may expire within a matter of months, to those who have been diagnosed, treated, and have survived 10 or more years. In the case of my wife, she had been a gym rat five days a week for more than 10 years prior to diagnosis. She was in excellent condition -- other than the myeloma -- and had no other complications that we knew of. So, I tried to explain that she had a lot going FOR her. She had a hard fight ahead, but she COULD win and WOULD win.
As I learned more about myeloma, I did become aware that some prognostic indicators may augur well or not so well. A chromosome-13 deletion or Bence-Jones protein prominence may be unwelcome. The blood panels and chemistries may point to strengths or weaknesses. The Kappa/Lambda light chain ratios may portend trouble, although these are undoubtedly the most difficult of all factors for us mere mortals to understand.
What we in the myeloma community need to do is keep our minds concentrated on the fight. We can know one thing intellectually yet work on another model subjectively. For most of us, fighting myeloma is like getting into the ring with a professional heavyweight boxer. We ask ourselves: How long will the fight last? How badly beaten up will we get?
But, while that intellectual model may seem depressing, we need to remember that the professional fighter is just using his same old tricks and that WE have an army of trainers and supporters working to help us beat the odds. That's what clinicians, researchers, and organizations like the IMF are working so hard for. And we in the myeloma community owe it to ourselves and to each other to keep on fighting. Don't get freaked by grand scale statistics. They don't apply to everybody. As a matter of fact, no statistic applies to an INDIVIDUAL patient.
We didn't ask for the fight. But we're in the ring, so we are going to give it our best shot. Phyllis has beaten the 2-year OS. In August, we celebrated our 50th Anniversary. Now, we are thinking about what we want to do for our 55th. We remember the words of Dylan Thomas: "Do not go gentle into that good night./ Rage, rage against the dying of the light."
EDITOR'S NOTE: After a year of helping his wife fight myeloma, and compiling extensive notes on the disease, Robert Heller wrote Multiple Myeloma: The Plain English Handbook for Patients and Care Givers, in the hopes that it may be of help to others on their journey through myeloma. Bob can be reached via email at firstname.lastname@example.org.