Robin Roberts has been diagnosed with myelodysplastic syndrome. Robin Roberts, co-host of Good Morning, America. Robin Roberts whom, according to one of the news stories I saw--quoting verbatim, "previously beat breast cancer five years ago."
In light of many recent discussions about the use of the word survivor, I was prepared to include a link that one of the respondents on Marie's blog included in her comment. It was a piece written in 2004. Eight years ago, the Journal of the National Cancer Institute noted some important points and posed more questions than it provided answers. In that very same edition, another article discussed the debate surrounding the message being sent by the "increased cancer survival rates."
In light of the announcement by Robin Roberts just hours ago, these words now have maximum impact. You may be inclined to draw the same conclusions as I have.....
- IT'S TIME TO CHANGE THE CONVERSATION.
- IT'S TIME TO STOP BELABORING WHAT MAY BE PETTY POINTS.
- IT'S TIME TO UNDERSTAND THAT WE ACHIEVE NOTHING WHEN WE SEARCH FOR WHAT MY DAD WOULD REFER TO AS "THE HAIR IN THE EGG."
- IT'S TIME TO PRIORITIZE: START MAKING A DIFFERENCE WHERE WE CAN. WE CAN CONTROL OUR OWN ACTIONS EACH AND EVERY DAY AND WE CAN PARTICIPATE IN LARGER ORGANIZATIONS AS PART OF A COLLECTIVE VOICE, TOO. THESE ARE NOT MUTUALLY EXCLUSIVE ACTIVITIES.
It may be convenient and easy to insist that any one person can have an impact on major, multi-billion dollar corporations, but the fact remains, unless and until all of us, the little people, are on the same page, nothing will change.
Some of the blurbs I found most telling, some of the things we are still discussing quite passionately EIGHT years later:
“survivor,” is controversial because it is used as a proxy for prevalence and does not indicate health status
In its newly released 2003 annual report, “Living Beyond Cancer: Finding a New Balance,” the President's Cancer Panel defined “ survivor” in terms that could be viewed as conflicting with each other. They said it meant “anyone who has ever had a cancer diagnosis,” but added that it is also synonymous with “ patient,” implying that a person who is post treatment, and maybe even cancer free, is still a patient.
that there appears to be a backlash against use of the word among those living with the disease. Some don't want to be called survivors “ when they barely feel alive,” while others want to distance themselves from “the time they were in treatment,”
raise the question of whether the survival statistics are an accurate measure of treatment success.
The President's Cancer Panel, which used the same statistics, emphasizes the “glass half empty” approach, highlighting the lack of understanding of longterm and late effects of cancer and its treatment
“It doesn't tell you where people are in the cancer trajectory. We do not know how many of the estimated 9.8 million survivors are newly diagnosed, in active treatment, post-treatment, cured, or dying of their illness.”'
Defining anyone who has ever had breast cancer as a survivor “paints more of a pretty picture of breast cancer than exists,” she said. “We haven't made significant progress in treating breast cancer, and this is not a message the public wants to hear.”
Those comments, let me reiterate, are from 2004. Both of the articles are as timely in 2012 as they were when originally published. We are still engaging in the same conversation and seem to still have a problem with words. I know words matter. Except if they don't. And except when they seem to be woefully inadequate.
I'm sure you will all join me in wishing Robin Roberts the very best as she begins treatment. She will be the recipient of a bone marrow transplant and expressed her gratitude that her sister is an exact match. She discussed her concern for others who are waiting for donors. This might be a good time for each of us to consider joining the registry. One of us may Be The Match for someone who is waiting for the gift of life.
I will be back Wednesday with new content. I still have a guest. Yesterday, she learned how to swim--in about fifteen minutes. She's anxious to practice her new skill. Going to don my lifeguard shades. And, the sunblock.