A Thriver's Story with Barb Cossman

Five years ago, my life took a turn. I learned a whole new language, met a bunch of new people, and my perspective completely changed. No, I didn’t move to a tropical island and live under a thatched roof eating fresh pineapple. Five years ago, May 2019, I was diagnosed de novo with metastatic breast cancer—immediately at Stage IV. I didn’t even qualify for surgery. The horse was outta the barn at that point, as they say. My cancer had spread to my hip, ribs, spine, liver and lungs.

Since then, this is what I’ve learned. I learned that MBC—as the cool kids call it— is Stage IV breast cancer. It means it has spread beyond the primary tumor. It means a lot of ups, and a lot of downs, learning to coast through them all.

MBC means my cancer is not curable, but it’s treatable. My subtype is triple positive, meaning it’s fueled by estrogen receptors, progesterone receptors and a protein called HER2, so I’m in treatment indefinitely to control all three.

Because my subtype is treatable, a nurse once referred to it as “chronic” and I latched onto that—it made it feel more controllable. But it means I will never be cancer-free. I will never ring a bell. I will never be in remission. It means I will be in treatment the rest of my life.

Every three weeks, like clockwork, I have infusion. I meet with my oncology team every nine weeks, and every four to six months I get CT scans and a whole-body bone scan. There are random MRIs and an annual echocardiogram. And here’s a new twist: suddenly my kidney function is declining.

That’s what living with metastatic cancer is like. Random side effects materialize. Every pain, every blip in bloodwork, you think it’s another metastasis. And let me tell ya, scanxiety is real. I live with this every day, every minute—and for someone with high-functioning anxiety, it’s…challenging.

Now I don’t say all this to gain sympathy or to be a martyr. I say it to educate people, to understand the reality of a metastatic diagnosis. All breast cancers are not alike, and certainly not across stages. The real kicker of all this is that Stage IV is the only cancer that kills. Yet, according to the National Cancer Institute, for every $1 million spent on breast cancer research, only 2% goes toward metastatic research. TWO. PERCENT. I NEED that to change. If Stage IV kills, why aren’t we investing in that?

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Now here are some great things that have come from this diagnosis.

I remember walking out of the University of Michigan Rogel Cancer Center after my first infusion, looking at my parents, saying, “Today was a good day.” Coming from someone who has always been entirely glass half-empty, it was shocking to hear these words come so naturally from my mouth.

A switch had flipped. I was optimistic. I stopped sweating the small things—face it, everything seems small by comparison. It’s hard to explain how you feel simultaneously at a loss, full of anxiety, despair and worry, yet calm. I had a plan and that day was the first day of methodically following that plan. And actively fighting.

Today, I look at my treatment like a spa day: I go in, get my port accessed, get a warm blanket, maybe some snacks, and the infusion nurses pamper me with miracle drugs.

I sometimes say that people have no idea how hard it is to live with metastatic cancer. And then I instantly feel guilty because I AM living. Not everyone GETS to. So there is gratitude. But it adds to the mental tug-of-war, the survivor’s guilt. It’s that dissonance of being ABLE to live, but with all the anxiety, side effects, appointments, triggers.

More good news: At the time of diagnosis, my rockstar oncologist said, “Who knows, four to five years from now we may be having a completely different conversation with all the research and advancements being made.” She was right. Since my original diagnosis, three new critical drugs have been FDA-approved. Game changers. One crosses the blood-brain barrier! And there are more in trial now.

I’m lucky. Yes, lucky. I'm on the original line of treatment five years later because it’s still working! I see people in support groups who are living 20-plus years with MBC who have benefited from the research, trials and new drugs that extend our lives. It’s awe-inspiring.

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Admittedly, it’s incredibly hard to stay hopeful and positive, especially when you’re naturally pessimistic like me (or realistic, as I like to say). Living with cancer is daunting, and the mental aspect is harder for me right now than the physical. Every day I combat anxiety, the voice in my head taking me down the treacherous path of the unknown future. But I am still here, living with cancer, living my life…and I am grateful.

One of the reasons I've been able to LIVE with MBC is my support system, my powerful village of family and friends. I would not be able to function like a semi-normal human without it. And ya know what? Many of them are…Zetas! Several were Alpha Gamma Chapter (University of Michigan) sisters with me. And my absolute rock, Karie McGowan Cates (Zeta Omega Chapter, Ferris State University), I met through the Ann Arbor alumnae chapter. We didn’t go to the same university, we weren’t even in school at the same time, but the alumnae chapter brought us together and I’m forever grateful. All these people are where I have found the SWEET in the BITTERSWEET of this whole mess. Experiencing the power of love, connection and possibilities.

Having people in my life who hold me up, make me laugh and make memories with me—that’s what’s gotten me through. You cannot do this alone!

So here’s my PSA:

Don’t just go through the motions at your campus “pink” events. Don’t just hand out flyers or ribbons. Understand it. Be authentic and educated and compassionate. Chat with survivors, absorb their stories and understand the WHY of our philanthropy. More than anything, know your body. Pay attention. Go to all the appointments. Do the monthly self exams. Be your own best advocate and don’t hesitate if you think something feels off.

ZLAM!