#Stage4Lifer: “I Am Not What Happened to Me”
Stage IV, or metastatic, breast cancer is breast cancer that has spread beyond the breast to other parts of the body. For #Stage4Lifer, Hear My Voice Volunteer April Hines reflects on her diagnosis with the disease and how it’s changed her life.
“I am not what happened to me. I am what I choose to become.”
Originally diagnosed with early stage breast cancer in 2012 at age 31, I endured every treatment available to me (surgery, chemotherapy, radiation and hormonal therapy; then later ovarian suppression and an aromatase inhibitor). After it all ended, I thought myself to be cancer-free. I moved on to choosing what I dreamed my life would become: getting married to the love of my life in October 2015, spending my honeymoon climbing mountains and planning for the future overall.
Shortly after returning home, I went in for a routine exam at my primary care physician’s office. The end result of this routine exam and everything that came after it was this: getting diagnosed with metastatic breast cancer (MBC) in January 2016. I now have breast cancer in my bones and liver.
I think the most important lesson I’ve learned thus far is that there is no right way to cope. The impact of learning you have metastatic breast cancer doesn’t stop affecting you on the day you learn the news. It takes time to work through the grieving process.
I can tell you that it’s not advisable to Google statistics. And, it’s okay to have the same expectation for your family and friends. I choose to spend my life creating amazing moments and not focusing on how many celebrations I might have left.
After absorbing my reality – there is no cure for metastatic breast cancer – and having my world turned upside down, I felt terribly alone. I felt that I’d failed my loved ones; that somehow people would think that I did something wrong. I found there were people in my life that weren’t able to handle my diagnosis – people who are no longer in my life. While I threw myself into advocacy educating the public on my disease, I found that others weren’t comfortable hearing my truth. I finally realized that it’s not my job to make someone feel better about this disease. This isn’t a pretty pink ribbon and we don’t have to romanticize our stories to make others feel better. I try to ask my friends that are uncomfortable hearing about this disease to remember that it’s even more difficult to live with it, especially with no support.
There are days where I’m enveloped with the “what if” thoughts. I am reminded by those who’ve been going through this for a while that it takes time to work through the grieving process. Some days I feel “normal” and can focus on advocacy work. Other times, stress means I need to step away from social media and advocacy for a period of time. I’ve found it important to repeat psychiatrist Carl Jung’s quote to myself over and over. It’s important that I remember that I’m still me; this is just me learning to live with metastatic breast cancer.
If there can be anything positive about this diagnosis, it’s the support. The silver linings are friendships with all the wonderful women and men who are MBC patients and those I’ve met through nonprofit organizations such as Living Beyond Breast Cancer, METAvivor and MET UP. Today there are so many social media connections that can be made globally on platforms such as Facebook, Twitter and Instagram.
When I first posted that I had been diagnosed with metastatic breast cancer in a breast cancer support group on Facebook, someone pointed me to online groups for MBC. Through those support groups, I found out about Living Beyond Breast Cancer’s Thriving Together Metastatic Breast Cancer Conference and thankfully my husband and I were able to attend in April 2016.
I can’t tell you in words how incredibly powerful it was to make these connections with people in the same situation as us. We celebrate each other’s victories as they’re our own victories, and we suffer the defeats the same way – together.
And, I believe one day we’ll achieve what I feel is the ultimate dream – better treatment options and improved quality of life for metastatic cancer patients, turning this terminal disease into a chronic condition. Until then, in the words of Dylan Thomas, “I’ll not go gently into the night; I’ll rage against the dying of the light.”
You’ve heard April’s voice. Raise your voice with #Stage4Lifer.
See April takeover our Instagram account @livingbeyondbc this Wednesday, September 26!
April Hines was originally diagnosed with stage IIB breast cancer in January 2012. She was later diagnosed with stage IV breast cancer on January 22, 2016. When she and her husband are not fighting breast cancer, they’re taking care of their dogs, hiking and kayaking near their home in the Chattanooga, Tennessee, area, and spending as much time as possible with their two nieces and nephew.