Here is a post I wrote last October for AZ Connections:
At a 2009 breast cancer seminar, I met two MBCN volunteers: Joani Gudeman and Shirley Mertz. I had never met another person with metastatic breast cancer. Joani and Shirley made me feel less alone. Their activism inspired me.
In 2008, Shirley and her fellow volunteer Susan Davis launched MBCN’s drive to formally establish October 13 as National Metastatic Breast Cancer Awareness Day. In October 2009, they succeeded: The Senate and House each unanimously passed a resolution to support that designation.
“It is critical to the thousands suffering from Stage 4 illness and to the general public that the voices of metastatic breast cancer patients be heard,” wrote Joani.
I would like to add my voice to that chorus.
I will never forget the day in 2009 when I found out I was of one of 155,000 US people living with metastatic breast cancer.
The oncologist said my breast cancer had spread to my lumbar vertebrae: “Hopefully the disease will remain under control for a long time although an ultimate cure is probably unattainable.”
You know how when you are going up in an elevator and sometimes it feels like the floor is dropping out from beneath your feet? That feeling lingered with me for weeks.
My cancer center’s library had two shelves of breast cancer pamphlets, mostly for women with early stage disease. One had chapters such as “Why You Should Get Prompt Attention,” and “Not All Lumps Are Cancer.”
Not very helpful to my particular situation.
I kept hunting through the shelves, the oncologic equivalent of Goldilocks sampling each bear’s porridge. Finally, I found a brochure that was just right: “Diagnosis: Metastatic Breast Cancer…What Does It Mean For You?”
This slim MBCN brochure promised “up-to-date facts — demonstrating that today, more women and men with metastatic breast cancer are living longer, productive lives.”
The brochure featured 15 questions and answers about metastatic breast cancer. Question No. 1 was: “Am I going to die?”
That cold and unspoken fear had permeated every cranny of my being for weeks.
“Though you may be concerned by statistics you have heard, keep in mind that every individual is unique,” advised the MBCN brochure. “Because statistics are based on the general population, they do not reflect the experience of any one individual. Each person brings to the table a unique set of characteristics that influence her or his experience with breast cancer. In addition, no really accurate statistics predicting survival for metastatic breast cancer patients are available today.”
Those few sentences gave me a lot of hope.
It’s been two years since my diagnosis. My treatment has been mild and I am very fortunate to be stable. But it’s a strange existence. The late Susan Davis, a tireless volunteer with the MBCN, said it best. Susan lived with mets for almost a dozen years. Although she endured progressively more grueling treatments, she said ultimately even the harshest side effects weren’t as difficult as the mental fight.
“I live in a constant state of hopeful dread,” she wrote. “I am hopeful I will be stable. I dread that my next test will show I am not.”
My mother died from inflammatory breast cancer a few weeks after I graduated from high school. Mom had no support group and practically no resources to cope with this rare disease. I have learned so much from other patients. I am grateful to have instant access to them via the Internet. Volunteering with the Metastatic Breast Cancer Network and other advocacy groups is very important to me. I want to help other patients and their families. I want the general public to be better informed about this disease. I want to make a difference.
The best thing you can do for someone with metastatic breast cancer is to be there for them—not just when they are first diagnosed, but for the long haul.
“I hate when people feel sorry for me and give me that look,” says one of my friends who has metastatic breast cancer. “We don’t have to talk about cancer all the time. Normalcy is great! I am still here—with hair or even bald. I’m here. Some days are harder than others, but I try to live as much as possible