Susan F was unwillingly thrust into the world of metastatic breast cancer after a routine mammogram in 2012. She uses her powers of persuasion, knowledge and writing for good in hopes of helping others similarly affected. She is a patient advocate, volunteering with METAvivor (metavivor.org), a volunteer organization raising funds for research in metastatic breast cancer.
Staying hopeful when others are dying of the same disease is one of the most challenging aspects of cancer.
There have been too many deaths this December. It seems as Christmas approaches, that the deaths from metastatic breast cancer pile up.
Women like Heather McManamy, a young mother from McFarland, Wisconsin, who was diagnosed with aggressive breast cancer in 2013, and wrote over 40 letters to her four-year-old daughter to mark the milestones in her daughter’s life she knew she’d miss. When Heather died, her husband shared her goodbye letter on Facebook.
"Yes, this sucks. It sucks beyond words,” her letter reads, “but I’m just so damn glad I lived a life so full of love, joy and amazing friends." She then went on to instruct her loved ones to remember her with a revel, to run up a bar tab of which she’d be proud.
And women like Adrienne Toth, another young mother, diagnosed with aggressive breast cancer when she was pregnant with her son, starting chemo during her second trimester. The cancer became terminal in March 2014 and Adrienne was dead by December 2015.
And Carolyn Frayn, diagnosed with stage 4 disease in 2012 at age 51, who died just a few days ago. Carolyn was a strong advocate for those with metastatic breast cancer, and as she pointed out, because early-stage breast cancer can move to stage 4 even years out, everyone who has been diagnosed with breast cancer needs to fight together for more research and an ultimate cure.
Cancer is capricious. It is impossible at this point, to tell if or when it will return. Once the cancer moves to stage 4, there is no way to know how long a person will live: statistics show that only 22% of stage 4 breast cancer patients will live five years. After my own diagnosis, an oncologist said that how long someone will survive is entirely dependent on the biology of the cancer and the biology of the person with that cancer. In other words, some people just have lucky biology.
Women like Sandra Spivey (who has lived 17 years with metastatic breast cancer), Jill Cohen (who has lived for 12 years) and Debra Strauss (who has lived for 23 years) — these women have been lucky and have lived for years with metastatic breast cancer.
That’s what we do, those of us with metastatic cancer: We look at these long-term survivors and we pray that we will be lucky too. We pray that 23 years from now we will be attending fundraising events for Living Beyond Breast Cancer, as Debra Strauss does, that we’ll be here to see daughters or sons graduate, that we’ll be able to play with yet-to-be grandchildren and maybe even live long enough to cash in that retirement nest egg. That is the metastatic cancer patient’s hope and dream.
The future is very uncertain for a metastatic cancer patient. As Carolyn Frayn noted in a 2014 interview with Laura Huffman:
“The most disconcerting issue I find is the uncertainty. We just don’t know how long we have left to live after a metastatic breast cancer diagnosis, when we will progress, what — or if — treatments will be available when we do, nor what type of death we can expect. We could live the median of two to three years, or we could be an outlier, that infinitesimal percentage of people who live 8, 10 years, or longer. It messes with your mind, your sleep, your resolve.” Michael J. Fox describes living with Parkinson's Disease as stepping into the road, then freezing in the middle of that road as a bus hurtles toward you. The challenge is how to live while a bus bears down. Life in the bus lane for me has required a delicate balance. A balance of living day by day, while looking toward the future for treatments I pray will be released just in time to save my life. I scour Twitter for articles detailing even the smallest cancer research breakthrough. Before scans, I search ClinicalTrials.gov or the Metastatic Trial Search tool in hopes of finding a clinical trial that might keep me alive until new treatments are released.
Every time I hear of cancer deaths, Nancy, my Imerman Angel, talks me down from my emotional ledge. She reminds me that my story is different, that I can’t judge my future by someone else’s story. We all have differing biologies, differing paths. But still, cancer deaths are hard to ignore. It takes a while for me to dim the black shroud hanging over my head and begin to hope that maybe my story will be different. I certainly hope to live more than five years and become part of the 22% — I am currently at year four. Frankly, hope is all I have.
So, I honor the women who have died before me and advocate for research to find quick-to-market, less toxic treatments in hopes of saving my own life and the lives of others yet to be diagnosed. All I can do is focus on each day I am given, say a prayer and live my life in the best way I know how. For me, being alive and advocating for research is holding on to hope.