My Friend Has Stage IV Breast Cancer. Here Are Some Things She Wishes You Knew

Here’s how you can help move these bills forward: Every bill has a version in both the House and Senate (see those bill numbers in parentheses above? HR means House of Representatives and S is for Senate; the HR bill is still TBD for the Cancer Drug Parity Act this year). You can find your representative here and your senator here, plus links to sites with their email addresses. Contact them and ask that they sign on to the bills as sponsors. “When a bill gets more and more signatures, the committee will be encouraged to bring it to a vote,” Tami explains. “Every two years there’s a new Congress, and if a bill isn’t brought to a vote within those two years, the bill dies and you have to start all over again.” Another way to show Congress that people care about these bills: March in the annual Stage IV Stampede in Washington, D.C. (This year it’s on October 17 and 18. The vibe is even more intense than at other cause-based walks, says Tami, who marches each year: “Because MBC is life-threatening, the passion level is incredibly strong. We are fighting for research that could save our lives or the lives of our children.”

Patients can have a say in what research gets funded.

Cool thing to know: The Department of Defense has something called the Congressionally Directed Medical Research Program, which helps divvy up funding for breast cancer (typically $130 to $150 million a year), as well as many other medical conditions. “What’s cool about it is that they include patient reviewers—they call them consumers—on the panels with scientists and doctors to help determine which research will have the most impact and which grants will be funded,” Tami says. “You can travel to Virginia or participate remotely and have a voice in the process, plus you get compensated a small amount for your time. Living with this disease, you’re always looking for hope: Am I going to be alive for the next scientific breakthrough? By participating this way, you get to see all these ideas that scientists have in the pipeline and impact which grants are getting funded. It feels very hopeful.” Find out how to get involved here.

It can be very lonely having a disease like this.

Imagine dealing with such a serious illness yet most people you interact with on a daily basis have no idea. “There are a lot of people out there who are not feeling well or are going through ‘scanxiety’ or emotional stress in an invisible way,” Tami says. “A friend of mine is going through chemotherapy every week, and only two people at her work even know. I wake up every day worrying about whether I’ll be here to watch my children grow up. People might have a hard time talking to their loved ones about their fears or their thoughts because they don’t want to hurt them. I don’t want to talk to my mom about it, or even my husband, because I feel like I’m just hurting them even more. Even though it’s my diagnosis, it affects everyone in my life.” What helps is when people don’t stop checking in. If you know someone living with a serious illness, she recommends you just keep asking, “How are you doing today?” “The ‘today’ is so important, because each day is so different,” she says. She also recommends finding a local support group on Facebook (like her group, METAVivors of NJ) and passing along these inspiring resources to anyone living with metastatic breast cancer: the website Find Your MBC Voice, the Instagram Every Day for MBC, and the podcasts Our MBC Life and Living Our Breast Lives.

There are tricks for staying positive, and they really work.

No matter how busy she gets, my friend takes time to pause and consciously acknowledge the things she’s thankful for each day. “Sometimes I think I’m actually happier than most people, because my threshold for happiness is so low,” she says. “Just being alive is enough!” When dark, depressing thoughts creep in, she has a trick to literally snap herself out of it, flicking herself on the wrist as a physical reminder to stay in the present moment. And she constantly repeats a new personal mantra that keeps her moving forward with a positive outlook: “Make each day meaningful.” “This diagnosis has made me want to live my life with purpose, and I encourage you to do the same for the issues you care about most,” she says. “Use your voice, speak up. One person can make a difference. Maybe this is a cause that’s important to you, maybe it’s not, but finding something that is and making that your purpose really does lead to a more fulfilling life. Despite my diagnosis, I make it a point to practice gratitude every day and really am determined to make each day meaningful.” Early in the pandemic, when so many people were struggling to cope with new uncertainty, Tami started her own business called The Eagle Method, which teaches a framework for building resilience and embracing the unknown: “I had already been living with uncertainty at the highest level, facing my own mortality for so many years, and I knew I could use these insights to help others.”

Taking a different path than you expected can have unexpected upsides.

If she didn’t have MBC, Tami would likely have gone back to work as a high-level media executive shortly after having kids, commuting into the city and working long hours. Instead, she ended up staying home with her kids and got to experience so many more day-to-day moments with them. Eventually, her activism within the Stage IV community led her to her current role as Global Campaign Director for #LightUpMBC—something that she finds fulfilling in a whole new way. “I’m proud to say I have led efforts to raise over a million dollars for MBC research working on this cause, and I really feel like I’m living with purpose. It’s not just about fundraising—it’s about a sense of connection and community for all patients and families affected by MBC. That said, it’s very hard emotionally because there is so much loss within this particular community. You just have to remember that every person’s path is different, and that we all have a choice when it comes to how we cope. The choice I make is to channel my grief into making a difference for future generations. When people I know die, it’s scary and sad, but it also makes me say, ‘This is unacceptable and it has to change.’ It just makes me fight even harder for a cure.”