I have been living with a small volume of bone mets since 2009. In some respects, I think my metastatic breast cancer shares some of my character flaws. We know that cancer represents cellular chaos—all cancers start because abnormal cells grew out of control.
I can’t say that I am out of control, exactly, but I will confess to being a messy person. Organizational skills have never been my strong suit. I have purchased many filing systems, sorters, tote boxes, but inevitably I always default to my H&P ways: Heaps & Piles. Heaps of things represent unstable stacks—assorted mail pieces, notebooks, brochures, various business cards that spring up on my desk like toadstools after days of rain. Piles have fewer shape variations and more structural stability: I have piles of books on my coffee table, piles of CDs on an end table and, of course, piles of laundry.
If I were a neater person, I would probably be a far more efficient person. But at 48 years old, I am just happy to muddle along. I am glad my cancer—so far—seems to have this same attitude. It is too disorganized and lackadaisical to do too much. Let’s face it: I am the Oscar Madison of the metastatic world, too.
I thought of all of these things yesterday when I heard Joan Lunden actually say the words “metastatic breast cancer” on television as part of a story to kick off Breast Cancer Awareness Month. In prior years, such coverage focused almost exclusively on early-stage breast cancer. They never acknowledged either the 150,000 U.S, people living with metastatic breast cancer or the 40,000 U.S. people who die from it annually.
When I was diagnosed with metastatic breast cancer 5 years ago, I found October a difficult month. I felt glad for those who had finished their treatment but I also felt angry there were so few efforts to acknowledge people like me who will always be in treatment.
I also felt helpless—my mom died from metastatic breast cancer in 1983 at age 53. Now I am living with it. What could I do to try to ensure no one else in my family would ever have to deal with this insidious disease?
I wanted to do something—but I was only one person—who would listen to me?
In 2014, I do feel my voice will be heard—thanks to LBBC’s and other groups’ initiatives. I am a board member of the Metastatic Breast Cancer Network, a founding member of the Metastatic Breast Cancer Alliance (MBCA). As Jean Sachs explained, MBCA is a group of patient advocacy organizations and industry partners seeking to improve the lives of and outcomes for those with metastatic breast cancer and their families. MBCA seeks to increase awareness and education about the disease, advance policy and strategic coordination of research funding.
MBCA’s tagline is “Together we are stronger than the disease.” I believe that is true. With a disciplined and orderly approach, we can do so much to help people living with metastatic breast cancer. And that is an efficiency and organization that even I am excited about!
Katherine O’Brien was diagnosed with a small volume of bone mets in 2009 at the age of 43. She continues to work full time writing and editing technical articles for a business-to-business magazine serving the printing industry. She’s a Metastatic Breast Cancer Network board member. Her blog is called “ihatebreastcancer.” When she’s not writing or volunteering with MBCN, Katherine enjoys reading, traveling and keeping up with her many nieces and nephews. She lives in the western suburbs of Chicago. Contact her via MBCN@MBCN.org.
Visit lbbc.org/hearmyvoice to read the other posts in our series.