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.
Excellent post, AnneMarie. Yes, words do matter. I have never felt comfortable with the "survivor" word.
ReplyDeleteBeth,
DeleteMe either.... Knowing the TRUTH makes it very difficult to embrace a word that has such a victorious sound. I'd rather tread lightly. Live fully and completely, but still, tread lightly.
Choice of words is incredibly important in this sensitive field. I use more words to describe these types of people, "fighting words," by saying "people punched with cancer." It gives so much more of a punch than "survivor." Keep up the conversation. xx
ReplyDeleteJan.... I like that... "punched with cancer" ... blindsided, too. Seriously. We are walking around FINE... generally feeling fine and BAM, we join the ranks of those who are (gravely) ill in the quest to "survive."
DeleteGood post, AM. The language in the news stories about Robin Roberts did bother me, for all the obvious reasons which I know I don't have to describe to you. Most of us who've ever been diagnosed with cancer are looking over our shoulders forever. What word describes that?? Vigilance perhaps, but other words come to mind as well.
ReplyDeleteHugs. BTW, I'm a lousy swimmer. Maybe you can help me improve my technique sometime. ;)
And, THIS is one more thing that's wrong with the magic five year bullet, too. According to what I see, while RARE (1-2%), this will happen generally between 5 and 7 years and can happen as far out as 20 years.
DeleteIt truly is time to change the conversation and get on the same F'ing PAGE.... I feel a rant coming and this story is the least of it...... It's yet ONE MORE person waiting to hear, "surgery or wait 6 months to see if it changes" ... either options sucks....
xoxox
Survivors indeed! We need to work on a more apt description. We're all surviving life in the best way we know how, but none of us really thought we'd be the one who gets the potentially deadly side effect. A bone marrow transplant is a harrowing experience. I'm devastated for her. I pray her sister's marrow works miracles.
ReplyDeleteXOXOXO,
Brenda
Me, too, Brenda. This was just heartbreaking. Hope your new project takes off!!
Deletexoxox
AnneMarie
I've never seen Robin Roberts, but I'm sorry for her. I consider her a survivor still, but one who had a terrible side effect from cancer treatment.
ReplyDeleteI do not consider myself a survivor. Cancer is going to kill me.
The thing is, you don't see women, like me, who are dying of the disease, highlighted in the news very often. Even when Lynne Redgrave was ill, or Elizabeth Edwards, the stories were pretty positive and in Elizabeth's case, mostly about her husband. That needs to change and the reality that many will not be survivors must be part of the conversation.
The statistics are completely inaccurate and include women who could never possibly have died of the disease but if you start showing us, than the pink parade doesn't look that great, does it?
It's hard to change language because those of us, the most passionate about it, have metastatic cancer and die. We suffer, we don't look lovely, we are bald over and over, we are skinny or bloated or hunched, we are on oxygen and in wheelchairs - and then we are gone. We aren't famous but if we were, we would become hidden. The women who survive put on the pink clothes and hats and run for "awareness" which is a waste of time. Those of us who know what this disease is, intimately, don't live long enough, have the time or energy to work on changing the language. I don't know Robin Roberts so I don't know if she speaks the party line or not, but if she has advocated mammograms for early survival, she probably does. She is going to get a big dose of reality soon, and then maybe she can help change perspective.
I am not a survivor. Cancer is going to kill me. I am a woman living, and dying, with cancer.
Oh Ann,
DeleteMy heart breaks for you and I agree with you on all counts. I couldn't watch the Lynn Redgrave commercials about how she was going to die eating chocolate or whatever, but she was NOT going to die of breast cancer. I cried every time it came on the screen.
EE's voice haunts me. "The research just has to catch up to me" .... and she didn't live to see that day.
I'm sure you didn't have a chance to listen but I did an interview for Pink Ribbons Inc. and I stated my feeling about the mets patients. About YOU. And about how I feel you are collectively pushed aside because you don't fit with the message of hope they try to sell with that ribbon. How you are "the dirty little secret" that "they" try to hide....
I don't wear a pink hat. I don't believe in awareness. Unless this is the awareness we are selling: 30% of early stage breast cancers will become metastatic and that number doesn't include those who were diagnosed at Stage IV to begin with. Almost all mets patients WILL die of the disease. NO funding is directed toward the mets research..... I did write something for the METAvivor blog that I hope gets posted soon.
You are right. On every single level... And I hope you know that I refuse to sell a message of hope on this blog or anywhere my voice is heard.
I stand beside you, to be your voice because I know you need to use your energy to take care of yourself FIRST and foremost. I watched friends die. Horrified that women are still dying in the same numbers..... after billions of dollars and decades of research?? UNACCEPTABLE.
You matter most. I will share whatever message you want shared with my big NY mouth. If this makes no sense, it's because it's late here and I saw this comment before heading up to bed. And I wanted to respond.... and to let you know I am here. Listening and ready.
Much love to you,
AnneMarie