I’m sure we looked like an unlikely group of friends. There were five of us with a list of names of staffers for North Carolina legislators sprinkled across Capitol Hill.
The most outspoken was Beth, covered in tattoos. She’s a tattoo artist and was diagnosed de novo (from the beginning) with stage IV cancer in 2014. She is a slim, beautiful blond with lithe limbs (she’s a practicing yogi) and amazing posture. As the president of Metavivor, she’s articulate and driven to make a difference for the women and men that are fighting this disease. While her tattoos may distract you at first, her ability to discuss pending legislation and potential funding with numbers in the billions was remarkable. She was joined by her boyfriend, an EMT from New York, with a head full of dreadlocks and a smile that can melt any woman’s heart.
The other pairing was a mother-daughter duo. Rhonda introduced herself at nearly every stop along our route as a lifelong Republican. She’s the mother of a young boy, and is the reason I know about all these metastatic communities. She was diagnosed with stage IV breast cancer in 2015, after fighting early-stage breast cancer 2 years before. I had floundered along for almost a year after my own diagnosis before I met her on a fly-fishing retreat for breast cancer survivors. We didn’t catch many fish, but she ignited a passion in me to learn more about the other women in the metastatic community. I didn’t realize how alone I felt until I met Rhonda.
In Washington, her mother accompanied her. I’d met her mother briefly earlier that spring when Rhonda was one of the co-founders of the Triangle Metsquerade, raising money for Metavivor. One of the things that impresses me most about Rhonda is her commitment to family and pride in her hometown community. She’s all sorts of southern charm – a smart woman with solid manners and the ability to follow-up any criticism with a “bless your heart” that just makes it feel like a comfortable pair of pajamas. And, she’s tenacious. She started planning that gala with two other metastatic breast cancer patients and she finished it by herself after they both passed. Their deaths from MBC tore at her on many levels and she did them proud by raising more than $100,000 for Metavivor in the first year of the event.
And then there was me. Who was I?
I was the oldest MBCer among our group. I’m a 48-year-old mother of teenage girls and a public relations executive. I’m a mother, wife, daughter, sister, and aunt. I’ve been living with metastatic breast cancer for about 2 1/2 years, since May 2016. It was my first time on the Hill talking about my own needs, and I wasn’t quite sure what to do or say – despite several hours of training and preparation.
When our quintet walked into the office lobbies of our North Carolina representatives and senators, I’m pretty sure the staffers weren’t quite sure what to make of us. We looked plenty healthy. We each sported a head full of hair and looked normal at a glance.
What they couldn’t see was all the surgeries we’ve had between us. The number of scans we’ve had while we waited anxiously for results, the number of injections of various medications we endure on a regular basis, the mix of medications that we take daily to keep the cancer from winning to manage the pain from the tumors’ spread across our bodies. They didn’t see the tears from all the friends we’ve lost to this disease and our own fears about progression that weigh us down.
One of the most memorable staffers was a hipster young man that looked like he modeled yachts. He was visibly uncomfortable and watching the clock for his next appointment. Just the mention of the word “breast” being tossed around clinically and casually made him flinch. His monogramed Oxford shirt with its baby blue University of North Carolina logo and coordinated Vineyard Vines bow tie didn’t match the severity of our conversation.
“It’s highly likely our children will grow up without their mothers,” we explained. “Without access to more research through the National Institutes of Health and that additional $2 billion in funding, studies are stalling out, and progress isn’t being made fast enough to make a difference.” We asked him to lend his support, and I think he was afraid to say anything but, “Of course, you can count on the senator.”
With another staffer, a young woman in a basement conference room, we described financial toxicity for patients. Cancer is expensive for everyone, and for many women the stress of deciding between dinner and drugs makes for a smothering layer of stress. Drug prices are about as consistent as the stock market. So we asked for their support of HR 1409, the Cancer Drug Parity Act of 2017. The Act requires health plans to offer the same coverage for chemotherapy given by a doctor as an infusion and chemotherapy taken as a pill at home. She seemed receptive and informed.
Another topic we addressed was new to me at the time. HR 6114 is the Metastatic Breast Cancer Access to Care Act. This piece of legislation is designed to waive the 5-month waiting period for Social Security Disability Insurance and the 24-month waiting period for Medicare benefits to patients. It’s mind-numbing that patients with a terminal illness must quit their jobs and wait for months before their insurance kicks in – often foregoing treatment in the interim. We spoke about the short-sightedness of the current Social Security policy and asked this staffer if they would be able to pay their bills while waiting 5 months to be paid. It seemed to resonate.
Did we make a difference? I don’t know. No matter what I think of politicians, it was hard to imagine any of the staffers could have looked us in the eyes and said, “That sounds ridiculous and there is no way my senator or representative can put their name, career, or money behind that cause.”
But I know it happens. Our requests were based on specific, daily needs and offer potential solutions to just a sliver of the overarching problem. The staffers each offered up empathy and concern, absorbed the information, and went onto their next meetings to discuss defense, roads, education, or the football game scheduled for the weekend. Each staffer is assigned multiple, unrelated issues to manage, and healthcare is only a small fraction of their responsibilities.
It felt good to claim my needs. For years at work I’ve encouraged colleagues to “aim your complaints and concerns at the people that can make a difference.” I felt like our day on the Hill was exactly that. A chance to take my issues – and the issues of my cohort – to a place where our voices could be heard by the individuals that we elected to make a difference.
When I shared with my daughters what that day was like, why I had taken a precious vacation day and flown to Washington to stand with four strangers, I could feel their pride in my work and that felt good. I want them to see their mother isn’t giving up easy and isn’t afraid to tackle different aspects of the problem far beyond the chemo chair. Cancer hasn’t robbed me of my sense of responsibility and adventure.
I love that our quintet was diverse in our own way. When we walked into the legislative offices, the staffers couldn’t see our battle scars. In their offices, desks decorated with their alma mater tchotchkes, phones blinking and emails stacking up, we probably didn’t look much different than their parents, their aunts, their uncles, and next-door neighbors. And, we might be. We each battle the disease differently, yet face many of the same chasms. Yet, maybe together, we made a difference.
Ann Camden, 48, of Raleigh, North Carolina, was diagnosed with a metastatic recurrence of HER2-positive breast cancer in 2016. She is a Living Beyond Breast Cancer Hear My Voice volunteer.
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