When Susan Rosen was first diagnosed with stage III breast cancer in 2010, she felt like those around her were more upset than she was.
She felt sure she would beat cancer. She wore her “Fight Like a Girl” and “Survivor” T-shirts and she embraced “the pink,” the pink ribbon being the international symbol of breast cancer awareness. After undergoing surgery, chemotherapy, and radiation, she breathed a sigh of relief when her scans came back clear — no evidence of disease, known as “NED.”
Looking back, she says ignorance was bliss.
Then in 2013, the Franklin, Massachusetts resident was told her breast cancer had not only come back, it had spread throughout her body. She had metastatic breast cancer. There would be no cure this time. Her doctors could offer her treatments to preserve her quality of life for as long as possible. But at some point, there will be no more treatments and time will run out.
Let go of the things you can’t control
For Rosen, 52, there was an initial feeling of shock. And there was anger. Why did this happen to her, she asked her doctors at Dana-Farber Cancer Institute in Boston. What did she do wrong? Nothing, they told her. Sometimes it just happens.
Her daughter had recently started college. Her son was beginning high school. Would she see them graduate? She didn’t want to leave her family, not now.
The day after her metastatic breast cancer diagnoses, she went through her dresser drawers and packed up her cancer T-shirts to give to Goodwill. Now, when people say things like “you’ll beat this,” she calmly tells them, no, she’s living with cancer, but she won’t beat it.
“I’m not battling cancer, because that implies some people aren’t fighting hard enough,” Rosen says. “I’m doing everything I can to live a happy life. But I’m not fighting, I’m living.”
Rosen describes herself as a positive person, but also a pragmatist. She doesn’t believe in sugarcoating anything. She adopted a simple mantra that has guided her through her emotional journey with stage IV cancer.
“I will not let the things I can’t control take over my life. Because then I would be depressed all the time, and that’s not living,” she says. “And I want to be happy. I want to experience all I can in the time I have.”
Confronting a new reality
Each patient has a different personality and set of needs before they got cancer, and the same is true after, says Sharon Bober, Ph.D., a clinical psychologist at Dana-Farber Cancer Institute who has worked with cancer patients and survivors for 20 years, in an interview with HealthCentral. People facing metastatic breast cancer will experience their own unique range of emotions on their own timeline, says Dr. Bober, who has not treated or seen Rosen.
But eventually each patient will have to confront the reality that they probably won’t live as long as they had hoped, Dr. Bober says.
“It’s completely normal for a woman living with metastatic breast cancer to be feeling like, ‘It is what it is, and I’m going to live as well and as long as I can.’ And then have moments when she’s completely furious and angry and sad and scared,” Dr. Bober says.
How do you want to spend the time you have left?
It’s also important for metastatic cancer patients to realize that a diagnosis isn’t an instant death sentence; some patients may live for many years with cancer.
“There are different types of conversations and different ways that people place their energy and focus when they have stage four disease,” Dr. Bober says. “But in many ways they are still living their day-to-day life in a regular sort of way.”
She tries to help patients focus on being in the moment and experiencing their emotions —whatever they may be — as they come. The goal is to help patients understand with clarity what they’re feeling when they’re feeling it, she says.
“I think it’s really important for anyone who is facing a potentially life-limiting cancer to start thinking about what is important to them, what your values are, and how you want to make the most of the time you have in front of you,” Dr. Bober says.
Fear of missing milestones
Rosen has moments of being overwhelmed by emotions. At times she experiences feelings of sadness and loss. She wonders about the milestones that may be beyond her grasp.
Last December 2016, her family took a trip to Disney World, a place she and her husband have been taking their kids to since they were small. She was having a wonderful time with her family, but while they were waiting for a fireworks show to begin, she noticed how many grandparents were there with their grandchildren.
“I just started crying. I looked around and I couldn’t help but think, ‘This is never going to happen for me,’” she says.
Over time, she has realized that her biggest fear is leaving her family before she is ready.
“I’m not afraid of dying,” she says. “But I want to see my kids grow up. I want to see those grandkids. I want to take them to Disney World.”
Still, she takes stock in how far she has come. It’s been four years since her metastatic diagnoses. The cancer has spread to her liver, bones, lungs, and brain, but she is still alive and kicking. Her son graduated from high school and is starting college. Her daughter graduated from college and is applying to law schools.
She’s hoping to see the next round of graduations.
For the last three years, Rosen has written a blog, Let Us Be Mermaids, which offers insights into life with metastatic breast cancer, including how she has planned her own funeral, penned her own obituary, and put journals together for family members.
She came up with the name of her blog because she sees mermaids as having many of the same characteristics of women facing breast cancer. They channel their energy and swim through unknown waters. Women with breast cancer have grace and beauty, even as their bodies may change or they bear the scars of their journeys.
As her journey progresses, Rosen tries to remain focused on the here and now. And she’s still surprising herself.
“I wouldn’t have known before that I had it in me to deal with all of this,” Rosen says.
If she were to make a new cancer T-shirt now, it would say simply, “bad ass.”
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Rachel Zohn is a mom, a wife, and a freelance writer who is striving to find the best way to juggle it all and maintain a sense of humor. She is a former newspaper reporter and a military spouse, so she’s familiar with the stress and anxiety that comes with constant moves and new communities. An insomniac married to an insomniac, she’s spent the last several years on a journey to help her youngest child tackle both migraines and sleep issues. She’s on Twitter at @rachelzohn.