In our final blog of this series, we share the stories of two women who are experiencing a Stage IV, Metastatic Breast Cancer diagnosis. Their stories are a bit longer, so let’s get started.
The Power of Purpose
“Once you’re diagnosed with breast cancer, that’s a major change. Any ache or pain set’s off an alarm. ‘Could it be cancer?’ is always in the back of your mind,” begins Dana* when asked about her Stage IV breast cancer experience. So when her back pain became so uncomfortable that it was painful to sit, she initially saw her chiropractor for pain relief, but fear of recurrence was always at the back of her mind.
In reality, she had a fractured vertebrae due to breast cancer bone metastases. She immediately went online to look up how much time she had left: was it weeks, months, or even years? “It’s like you forget you’re not a timeline,” Dana recalls. “My doctor had to remind me that there isn’t anything published out there that reflects how much time I have left,” she states with emphasis.
Testing for her cancer’s genetic make-up allowed doctors to pinpoint the best treatment for her: a new FDA-approved immuno-therapy drug. “There aren’t long-term studies on this new drug—it was pushed through because they saw positive benefits—and that is scary,” Dana confesses. “They don’t know everything about it. Yes, there are bad side effects, but we don’t know the long-term negative effects, either.”
When asked what her greatest challenge is, Dana replies, “When you have Stage IV breast cancer, it’s just harder to get away from being a cancer patient.” She continues, “You can’t put it behind you. Everything brings you back to the cancer.” Like when she was experiencing dizziness and her clinician considered a brain scan to rule out brain mets. “For a non-cancer patient, that isn’t where you’d go first – maybe vertigo or inner ear problems, but not brain mets,” Dana declares. “Cancer takes away a lot of decisions. It has so much power.”
As for what she fears the most, Dana’s voice grows quiet with emotion when she says, “How hard it is going to be on my family. I don’t want them to have the burden of trying to take care of me at the end.” She goes on to explain, “My husband is older than I am and my (adult children) have families of their own that keep them busy.”
Even though Dana is retirement age, she chooses to continue working. “Earlier in the year, I made the decision to cut back on hours at my job because I had a new grandchild. For me, that felt like a success: it wasn’t because cancer was making me do that.” For Dana, trying not to dwell on cancer by focusing on work and other things is therapeutic. “When I’m at work, I’m not thinking about cancer. When I am with my grandchildren, I’m not thinking about cancer,” she states firmly. “Like today, I think, ‘Well, I feel OK. I don’t feel great, but I’m probably not going to die from it today.’ I just keep going forward.”
Attitude is Everything
Linda* starts her story by saying, “I call it ‘we’ have breast cancer because it affects my whole family: my husband and 2 sons.” And it has been her family that continues to pull her through, especially after her cancer recurred four years after the initial diagnosis.
Four years after her son special-ordered pink high-tops to wear at his basketball games because Linda couldn’t be there to watch. “Missing out on those joys and activities your kids are involved in was really difficult,” Linda mourns. “I don’t want my medical appointments, tests, and doctor visits to rule my life, but they are important,” she emphasizes.
And every time she goes in for one of those appointments, tests, or scans, she worries, “Are they going to find something?” This is especially true when Linda has to be hospitalized for issues relating to her initial chemotherapy regimen and cannot continue her current chemo for two months. “Then I really worry that the cancer is growing in my body,” Linda admits, even knowing that her current chemotherapy regimen has reduced her metasteses to NED status: No Evidence of Disease, with all but one spot having disappeared on her PET scans.
“My doctors told me to go out and live my life, which I have always done,” Linda says passionately. “I continue to do so, because I will not let cancer control and define me.” Linda’s optimistic outlook leads her to believe, “I have two options: I can either accept that I have this chronic disease and live life to the fullest, or I can say, ‘Poor me, poor me,’ and be a bummer.” In living life to the fullest, Linda travels whenever she can, taking out travel insurance in case of emergencies and researching where she is traveling to determine if there is a good hospital nearby. Her optimism extends to the infusion center as well: she dresses up when going to chemo, because “It makes me feel good. When I shine, everyone else in the room shines. I enjoy bringing an upbeat moment to others going through the same thing I am.”
For Linda, the most challenging part of living with metastatic breast cancer is in thinking about her children. “I want to see the joys of them being married—all the different stages in their lives,” She states wistfully. “With metastatic cancer, you look at your future: what do you want to leave and what mark have you made for your kids? They have the values we’ve given them, they’re happy with who they are. They have the tools to succeed in life. We all have challenges in life, but we want them to know how to overcome these challenges and grow from them.”
Doing normal things brings Linda joy, “Being able to walk the dog. Noticing the sun setting. Laughing at crazy TV shows. Doing things and not thinking I have cancer.” I’ll end her story with one of Linda’s firmest statements: “I am not the victim here.”
A Professional Perspective
“A metastatic cancer diagnosis and treatment can really narrow your focus and your world,” begins Ali Cain, licensed social worker at United Breast Center. “You’re forced to come to appointments all the time and think about cancer and talk about cancer and live and breathe cancer,” she says in one long, run on sentence, perfect for the situation she is describing.
“I try to help people remember that their life is much bigger than their world of cancer,” Ali shares. “I encourage people to open themselves back up the world: nurturing multiple areas of their life outside of their physical health.” This means urging patients to rekindle meaningful social relationships, getting out and enjoying nature, pursuing creative interests, eating healthy, getting adequate sleep and most of all, “Reminding people that they are more than just this one thing – cancer,” Ali finishes.
For metastatic patients, who know that their chronic illness is also terminal, “I encourage people to start end of life conversations earlier, even if that’s difficult,” Ali states. She has found that the patient and their family members are often thinking about it anyway, and Ali suggests that, “it may be easier if you start a conversation earlier and build on that dialogue, allowing it to get easier with practice rather than waiting until the end.” She cautions that, “People sometimes make assumptions that they’re going to have a lot of time to have those conversations, and they might not. If you really have strong feelings, thoughts, or opinions about what you might want, make sure that gets relayed to your family early on.”
Ali also understands that family members may not want to listen and talk about death and dying, even though a patient may really need to do so with their family. “I had a patient I worked with tell me that their family was resistant to talking about this with them, so they came to a compromise: they would set a time limit to their discussions, anyone could take a time-out if they didn’t want to talk anymore, and they met in a place outside of their house,” Ali shares.
Wherever you are in your breast cancer journey – whether it be Stage 0 or Stage IV, newly diagnosed or 30 years into survivorship, in remission or recurrence, in treatment or not – know that you are not alone. That others are walking and have walked the journey before you. Reach out to Firefly if you need support at any point along your way.
“If I have seen a little further it is by standing on the shoulders of Giants.” (Sir Isaac Newton) Thank you to Dana and Linda for sharing their time, their challenges, their fears with us. We firmly believe that we all benefit from the wisdom and experience of the “giants” who are willing to share their stories with us.
*Names have been changed to protect privacy.
Written by Amy Tix, Firefly staffer and breast cancer survivor, who (foolishly) thought she was done growing when she turned 17! Ah, the stupidity of youth. Today Amy stands taller and sees further with every story heard, every word written, every experience shared with you, her readers.