Oh, goodie, It's October. What a colorful month! I love the reds, oranges and yellows of this season, but I am wary of the pink.
The pink is for Breast Cancer Awareness. October is Breast Cancer Awareness month. I very much appreciate anyone who walked for me, raised funds, and who've given me a host of pink swag. It means you love me, and I feel exactly the same about you all.
But the pink is out of control! From its inception in 1992 to encourage early detection with mammograms, the infamous pink ribbon morphed into an avalanche of craziness. Pink latrines. Sexually suggestive high school football games (Save the Tatas.) Sexually suggestive Ts and active wear, endless parades of Messenger posts asking me to post a heart for the non-existent breast cancer prevention. Maybe worst of all: Corporations whose fundamental mission also causes deadly cancers, paint
their equipment pink -- the height of hypocrisy.
their equipment pink -- the height of hypocrisy.
There's money in all of this. Some organizations raise and spend billions. There's a huge problem: until recently, most funds weren't spent for research on the killer: metastatic breast cancer. It has been spent instead on programs designed to get women to get their mammograms.
As my favorite organization, METAvivor rightly points out, cancer that never leaves the breast doesn't kill. Metastatic cancers of all types kill, by compromising vital systems. METAvivor notes:
"...100% of breast cancer deaths occur because of metastasis, and almost 100% of people whose breast cancer has metastasized will die from it. In the United States alone, this means that more than 40,000 vibrant lives are lost each year.
Despite these realities, the popular breast cancer fundraising movements give on average only 2% of their research funds to researching metastasis. Instead, their primary focus is on prevention, which does nothing to help those already diagnosed, and early detection, which does not impact those facing the ultimate death sentence of stage 4 breast cancer. And while only 6% - 10% of initial breast cancer diagnoses are metastatic, 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die."
However, the tide is turning. After receiving much criticism, the Susan G. Komen foundation is dedicating $26 million to metastatic research and support. It's a start.
There are other worthy organizations:
The Metastatic Breast Cancer supports metastatics and caregivers. http://mbcn.org/
Living Beyond Breast Cancer https://www.lbbc.org/
If you support breast cancer this month, spend your money wisely and in a way that helps us most.
Struggling with Her MBC Voice: Olivia Newton-John
It's funny how folks struggle to understand the unique dimensions of Metastatic Breast Cancer. Recently, another breast cancer story marched across the world stage: Olivia Newton-John has returned to treatment for breast cancer. But once again, poor reporting ranged on the edge of ethical reporting. Here is what I have posted on social media:
For everyone offering thoughts and prayers for Olivia Newton-John based on the highly inaccurate US media reports, let me elucidate:
We can always hope for miracles but the way her announcement has been reported in the media is very, dangerously misleading. Those who have her disease are angry at the misinformation and poor reporting on this.
This isn't the third time she's "battling" cancer. She has Stage IV breast cancer and it has progressed again. She has chosen to limit treatment and concentrate on wellness.
...However, 30 to 40% of those who get breast cancer eventually move on to its metastatic form. No one yet knows who or why. They don't even know how many of us there are, because there is a criminal lack of research in this area.
So, barring getting hit by a truck, those with metastatic cancer know that they are dying of cancer. Treatment isn't curative, it delays the inevitable.
ONJ has known this for years. Moreover she's been in treatment all of this time, and her treatment is probably as difficult as it is for all of us -- slow torture isn't inaccurate.
That Olivia has chosen not to pursue certain medical treatments, means that she is choosing to move on.
There is no miracle yet. There is no cure for metastatic breast cancer.
Please pray for ease, peace and comfort. She knows very well what comes next as we all do....
Here are practical things that can put your thoughts and prayers in action.
1. Learn the facts about breast cancer at metavivor.org/awareness
2. Donate to one of the funds listed above.
3. Think about how you talk about metastatic cancer in general. The folks who are dealing with this have a road that you cannot imagine. Those treatments are often brutal. But they can extend life by years. Decades, even. They really have no hope for recovery, they hope for time; for effective treatment and relative comfort. For lessening of pain, and for health care that they can rely upon.
4. Fight for healthcare justice. Right now every one of my sisters is dealing with being denied pain meds (cannabis and opioids are vital) and worrying about their health insurance. The injustice chokes us. Today's political climate was literally the last thing they needed in many cases -- I even know people whose lives have ended too soon as a direct result of the current political situation.
5. Avoid donating money to the pinkwashing campaigns where most of the funds go into awareness programs that accomplish little....
These are the things you can do for us. Thank you.