Average: a single value that represents or summarizes the general significance of a set of unequal values.
As a former engineer, the word average, mathematically, represents something simple and very understandable. As a Multiple Myeloma/Cancer patient the understanding and use of the word average carries an entirely different vibe.
Truth be written, I get somewhat nervous when the doctor or FNP starts visiting with me about my treatment or current condition while utilizing in some manner or fashion the word “average.”
ME: So how am I doing? Am I responding well, or do we need to look at making a change?
DOCTOR: Well things look OK, your response to the treatment has been good.
ME: What does that mean? How are you defining good?
DOCTOR: Well, you are responding in a very average way. Your responses have been average. You are right in the middle. No concerns.
When I was first diagnosed with MM, the doc told me to avoid the existing myeloma numbers that are "out there" when trying to assess my situation. The numbers “out there” do not account for me specifically. He was giving me some solid advice about avoiding comparisons between situations that most likely are not comparable. Everyone is different, everyone has their own journey.
Eight plus years later when inquiring about my condition, I was told that I was responding in a very average way. Oh boy, that sounds like a comparison has been performed. When did this acceptance of comparison begin?
There are so many questions that I can bring to the table when trying to understand what an “average” response to treatments represents.
Does average indicate that my response was not excellent? Has my response not even made the “good” level? Could my response to the treatment have been better? How far above bad is average? What “n” (sample size used in calculating average) are you using when calculating the average – 100, 1,000 or 1,000,000? Are we shooting for an average response or are we shooting for an excellent response? Is average the goal? And if above average is our goal, does not this beg consideration for a different treatment. And if so, what does the timetable look like for implementation?
Could the use of the word average reflect an expected life span? Does it mean that I will be checking out sometime around whatever the average life span is for a MM patient? And how was this average determined? Were my specific results included when determining the average?
See what I mean (no mathematical pun there by the way)!
The questions that could be raised when using the word “average” are almost endless. Using the word “average” brings a groan from my lips. It offers extraordinarily little comfort and as usual it brings no answers.
SOOO, how am I really doing?
Well, I got up this morning and went for a short walk to clear my head because my mind has been too wrapped around the unanswered questions that appear when a doctor uses the comparative word average. I desired to eliminate the internal talk that demanded an exactly accurate and precise definition of average without any perceived comparative notion.
It does not take a genius to realize that treating cancer is both art and science. And there is no one precise representation of average EXCEPT when the value of average is exacted from a population of one – me. And that goes against the very definition of “average” presented in the first line of this post.
How am I doing? Well, I am doing as I am doing. If I can enjoy my existence (it is important that I define what enjoying my existence looks like) then why do I need another’s opinion as to how am I doing? I am fine. I am struggling, I am scared. I am grateful. The list of “I am” statements is endless and as a representation of where I am at, it can change at a moment’s notice. After all, I am still playing this game called life.
It is understood and accepted that my oncologist will provide an honest assessment of my MM/cancer medical condition. This honest assessment will most likely determine what/when the next treatment looks like and happens. He knows me and my cancer like no-one else. His experience and medical wisdom will be the roadmap used moving forward. That is his job. The roadmap will be based on what he perceives to be the best course of action given how I have responded to existing/previous protocols. That will be his answer to how I am doing.
What I must remember is that only I can answer the question “How am I doing” – non-medically. That is on me. And the word average when I am taking inventory of myself has truly little to do with math. Each day as I move forward, I can make a choice as to how I manifest the “how am I doing answer that I provide myself.
Excellent. Good. Average. Not so good. Bad. Words with a comparative overtone. Words whose manifestation can be scary. Regardless, I must be mindful of whose task it is to define their meaning under the circumstances presented.