Zack Robidas is Marnie Schulenburg’s widower. He is an actor, a native of Reading, and a resident of New Jersey.
“How much time do I have?”
That was the first question out of my wife’s mouth when she was told she had inflammatory breast cancer. It was days before her 36th birthday and she was on speaker phone with her doctor, holding a notebook in one hand and a breast pump in the other.
Her doctor wouldn’t speculate. Instead, she told my wife that everyone responds to treatments differently and urged her to keep living her life.
And so she did. For two more years.
My wife, Marnie Schulenburg, who died in 2022, was an Emmy-nominated actor best known for playing Alison Stewart on As the World Turns. She was also a sister, a daughter, an aunt, a theater nerd, a singer, a terrible nail-biter, a lover of monogrammed gift giving, and, at the time of that phone call from her doctor, a young mother trying to figure out how to breastfeed a 5-month-old from one working nipple.
Inflammatory breast cancer, or IBC, is an often overlooked and aggressive form of breast cancer. Its symptoms can resemble infection or inflammation, and it is often misdiagnosed as mastitis.
Marnie had been diagnosed after months of symptoms that initially looked like mastitis. But Marnie didn’t have mastitis. It took three rounds of antibiotics and roughly eight weeks of treating mastitis before we learned the truth.
By the time her cancer was diagnosed as inflammatory breast cancer, it was Stage 4.
This is where Marnie’s story becomes bigger than Marnie.
We call ourselves Marnie’s Army, and we’re advocating for laws that would help make that approach part of medical education and practice. We’re asking state legislators to enact “Marnie’s Law” to require healthcare programs to expand their curriculum to include education on IBC.
On Oct. 19, Marnie’s family, friends and supporters will gather at the Pennsylvania Capitol with legislators such as State Reps. Jennifer O’Mara (D., Delaware) and Bridget Kosierowski (D., Lackawanna), who are working to advance Marnie’s Law.
Marnie was an extraordinary self-advocate. Her wellness notebook was filled with pages of questions, medications, side effects, treatment protocols, and notes from appointments. She often knew her own drug protocols better than the people treating her.
And still, she needed someone to recognize what she was experiencing.
That is why I believe the answer has to be: Educate. Evaluate. Escalate.
Educate medical professionals about inflammatory breast cancer, particularly those who care for women during and after pregnancy. Evaluate symptoms when they don’t respond as expected to the initial diagnosis or treatment. And escalate when something doesn’t add up.
Marnie understood the importance of telling her story. Before she died, she went public about her diagnosis because she wanted other women to know what had happened to her. In a Facebook post days after her diagnosis, she wrote:
“On the eve of my 36th Birthday I contemplate, ‘How does one celebrate a birthday after a Stage Four Breast Cancer Diagnosis in the middle of a global pandemic while raising a 5 month old?’” She then urged women to read about IBC to learn more about it.
Now, we are trying to amplify her message to help the next mom have more time.
More time to raise her child. More time to sing. More time to audition. More time to bite their nails and give out monogrammed gifts.
More time to live.
That is the point.
Marnie never half-assed anything. She approached work, friendships, family, and motherhood with the same determination. She made people feel like the most important person in any conversation, and it wasn’t a performance.
Educate. Evaluate. Escalate.
So when her doctor told her to go live, that’s just what she did.
She kept singing, acting, auditioning, visiting the ocean, biting her nails, and most importantly being Mom to our daughter, Coda.
I had a two-year, ringside seat to one of the gnarliest fights ever.
But the question of time replays in my head nearly every single day.
“How much time do I have?”
Could she have had more?
Marnie’s story is not about blaming one doctor or one decision. Mastitis is common. Inflammatory breast cancer is difficult to recognize. Doctors have to make decisions based on the information in front of them.
Marnie may be gone, but IBC isn’t. And neither is the possibility that we can get better at finding it.