The messages tend to start like this:
OK, ladies, it’s that time of year again: Breast cancer awareness! We all remember last year’s game, wanting you to answer the question, …
For the Greater Good of What?
Every year, when those breast cancer awareness games start making the rounds, I just cringe.
Why, you ask? It’s fun, lighthearted and seems like it raises awareness. But does it really?
Please let me share some thoughts of my friend Kate Strosser. When Kate, a woman living with stage 4 Inflammatory Breast Cancer (IBC) saw the invitation to play, she didn’t see pink, she saw red. Her thoughts speak for many of many of us, and I wanted to share.
Who and What does this Hurt?
Breast cancer is not a game. In North America alone, 59,000 women die each year from breast cancer. More accurately, they die from metastases or breast cancer that has spread to other parts of the body. Breast cancer is not about putting pink on your fb wall or your body, being a cheer-leading warrior or hoping that participating in a race will lead to a cure. I love a show of support and a willingness to contribute, but after 20+ years of such efforts, the death rate from breast cancer has decreased very little.
Twenty plus years of such efforts have led to the generalized attitude that breast cancer is curable. Sometimes it is – but 30% of those women who are supposedly “cured” will have a recurrence of breast cancer later in life. Newer drugs and radiation techniques have contributed to longer term survival and better quality of life for those living with breast cancer. Living with the disease is still a daily struggle however. Side effects of long term cancer treatment are debilitating, but little is known about treating or preventing these disabilities. Surviving with the disease for several years is a relatively recent phenomenon, and the conditions resulting from constant chemotherapy are only beginning to register on the radar screens of the researchers.
More insidious and perhaps even more harmful is the attitude of blaming the victim when she does not return to pre-cancer energy and lifestyle. Or somehow believing that a woman diagnosed at Stage III or IV must have done something wrong (overweight, no mammogram, poor lifestyle). There seems to be a lingering suspicion that these women are malingerers who should just be able to get on with their lives and return to gainful employment.
Disability insurance representatives and reviewers for Social Security Disability, who have no background in oncology, question women as to why they continue to need financial support. Women who do return to employment often have difficulty getting reasonable accommodations, in spite of the Americans with Disability Act.
The truth is that chemotherapy is a poison, and after being “poisoned” for months, lymphedema, neuropathy, reduced cardiac efficiency, chronic fatigue and cognitive impairments are all probabilities. These conditions result in decreased functionality and the inability to handle full time employment for most women with advanced disease.
Breast cancer is not a game. It is not pretty pink ribbons, cute or even feminine. It is debilitating. It is deadly. And after 20+ years of awareness activities, isn’t it time for new strategies?
KS
Real support
As grateful as I am for the “poison” saved my life, as grateful as I am for the amputation that saved my life, and the tireless workers in the medical community who fought for me, I am not grateful for the misguided attempts at humor, deflecting attempts of blame for my disease or any general mentality that my illness was just a “bump in the road” to get past.
Not a game
Cancer is real and personal. Because while it’s great to keep spirits alive with a joke or two, there’s nothing funny about breast cancer. Eight inches, times two. Not my shoe size, but the length of the scar on my chest where my breast used to be. Times two, because both of my breasts had cancer.
Cancer is real. It is not sexy. It not funny. And it’s definitely personal. And even when “cured” many of us live with post cancer impact for the rest of our lives.
So I echo Kate, isn’t it time for new strategies?
this article was co-authored by Terry Arnold & Katheen Strosser,a retired Associate Professor at Edinboro Univesity of PA, and grandmother with hopes of buying granddaughter Grace her wedding gown.
By the way, if you think this is just our thoughts, this is the radiation mask of Casey, diagnosed with Inflammatory Breast Cancer at 29 yrs old, she will tell you breast cancer is not funny either. Sadly, she passed away just after her 33rd birthday, or she would tell you herself.
