Living with Metastatic Breast Cancer
By Dana Getz
Cozy pockets of Rachel Steigerwalt’s Swissvale home are scattered with encouraging cards gifted from friends and family. Bright, personalized artwork and quirky momentos sit alongside pill bottles, vision boards, and her napping cats. A kayak she is selling lays across one side of the front porch. The welcoming craftsman home reflects the complex journey of the woman who lives there.
It began in June 2017 when Rachel found herself struggling to recover from her weight training classes. As an avid exerciser, she was used to feeling sore while training for marathons or backpacking. But when it became difficult to raise her arms during workouts, she took notice of a difference on one side of her chest versus the other.
As a healthy 39 year-old with no family history of breast cancer, she wasn’t very concerned. Still, she decided to have it checked at her UPMC office employee health clinic. Within three weeks, Rachel was sitting with her sister awaiting her first chemotherapy treatment.
“It really rocked my world,” Rachel reflected emotionally. “Up until that point I thought, ‘I’m going to fight this. I’m going to do chemo and have surgery and then I’m going to put this behind me.’” She was shocked when her doctor informed her at her first treatment that the cancer was Stage 4 and had metastasized to her bones — a diagnosis that meant she would need to be in treatment for the rest of her life.It is estimated that as of January 2017 over 150,000 people in the United States were living with Metastatic Breast Cancer (MBC); this means that the cancer has moved beyond the breast tissue and spread to other areas of the body. The focus of treatment is no longer to cure the disease, but to slow its progression. Rachel is one of only 5% of women with MBC at first diagnosis.
It took time for Rachel to reconcile with this terminal disease, particularly because until this past summer she only felt side effects of her treatments rather than any symptoms of the cancer itself. Over time, she began to view MBC like other chronic illnesses, noting her mother’s 45-year experience with Type 1 Diabetes as a particular source of inspiration. Rachel stated that her mother’s long journey makes her “want to believe.”
During the first month after her diagnosis, Rachel woke each morning briefly forgetting her new reality before it would flood back into the forefront of her mind and she’d begin to cry. Of course, she explained, “there were other reasons to cry” during this early period of chemotherapy treatment. Besides the harsh physical side effects that included nausea, vomiting, fatigue and hair loss, there was the unanticipated “mental and emotional load.”
And yet, as we spoke about her illness, Rachel, a self-described “idealist,” repeatedly circled back to the unexpected but appreciated joys of her cancer journey.
“The most surprising thing to me is I’ve never felt so loved in my life. That’s the huge silver lining to this. I never imagined so many people would go out of their way to express encouragement and support.”
Rachel spoke emotionally of her sister, Teresa, who has answered her late night calls to bring Rachel to the ER, but also playfully created vision boards with her at a cancer conference they attended together. She recalled with awe the many friends who created YouCaring fundraising campaigns and her running club who raised $10,000 when members auctioned shaving their heads in her support. One friend who works from home stayed with Rachel during her chemotherapy recovery days even though Rachel could barely speak. And when a tumor pressed on a nerve resulting in double vision, another friend crafted a quirky eye patch covered in googly eyes.
As the cancer has progressed, her friends and family have utilized Lotsa, a unique website where they have been able to sign up to help her with meals, appointments, laundry and lawn care. Sometimes friends have helped the most by just being fun and taking her focus off the cancer.
“I have,” Rachel shared with emotional gratitude, “an amazing support system.”
This buoys her as she continues searching for a protocol that she can stay with for the long term. Although breast cancer awareness has grown, the complexity of the disease is less understood. There are different subtypes that react to hormones in specific ways. Initially, Rachel’s cancer was triple positive, in which one aspect of her form of cancer was known as HER-2 positive. Approximately “1 in 5 breast cancers” have this gene mutation that tests positive for the protein “human epidermal growth factor receptor 2.” Unlike chemotherapy—which doesn’t discriminate between cancer cells and other fast growing cells like hair and taste buds—the clinical trial treatment specifically targeted HER-2 cancer cells, resulting in less side effects for Rachel.
Unfortunately, one challenge in treating MBC is that it can be, as Rachel described it, “a moving target.” As the cancer has spread more into her liver, new biopsies revealed that she is no longer HER-2 positive, but HER-2 negative. Although scientists do not know whether these changes occur as a result of the treatments or a natural progression of the disease, it does mean that treatment must constantly adjust to the changing cells. As a result, Rachel is no longer in the original clinical trial. However, this HER-2 status change opens her up to other uniquely targeted treatments.
Rachel believes that Metastatic Breast Cancer is often lost in the “pink ribbon” campaigns, so she hopes that sharing her personal experience will draw attention to the need for increased MBC research and support. Last fall Rachel participated in a video campaign that helped to raise $5,000 for breast cancer research at Magee Women’s Research Institute. Also, as a former Community Connector volunteer for Living Beyond Breast Cancer she reached out to women new to breast cancer to make their path easier.
Now 40, she calls upon her varied life experiences to help her move forward. From her study of meditation to a career in health and social services, she posits that each experience has brought her to the best place in her life to cope with this challenge.
One of the biggest obstacles for Rachel in her cancer journey (a term that she prefers to the ubiquitous “battle”) has been accepting growing physical limitations. But her marathon experience taught her that little efforts each day will take her toward her goals. She has found joy in the simplicity of playing piano, being with friends, taking nature walks, and was able to attend Burning Man in August with some of her closest friends.
“It’s a fine line sometimes,” Rachel shared knowingly, “between living in fear of what could happen and just living.”
Even though she feels that getting cancer is simply bad luck rather than a “teachable moment,” Rachel can’t help but see a lesson in it for all of us.
“Having received a terminal diagnosis, I am more aware than most people that my days are finite. However, tomorrow is not guaranteed for any of us. My advice for everyone is to show and tell your loved ones how much they matter to you, and to practice living in the present moment. Find something to celebrate each day!”
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