This Is What It’s Like to Be a New Mom Battling Stage 4 Inflammatory Breast Cancer

It’s breast cancer awareness month, my favorite time of the year where we get to be aware of our boobs! Oh and cancer. Crap. On this episode of Wine & Gyn, I spoke with Marnie Schulenburg and her husband, Zack Robidas. Marnie and Zack became first-time parents in December 2019. And then 2020 hit. In what can only be described as the worst year ever, Marnie was diagnosed with inflammatory breast cancer, stage 4, metastatic.

Since there is a link between breast cancer and alcohol, and as a breast cancer survivor myself, we decided to scrap the wine, and just talk breast cancer survivor to newly diagnosed about the best and worst parts of having breast cancer. And Zack. Well, he was there too. And his role is actually pretty important. Friends and family are the best support system when you’re going through cancer. They’re like human bras. And Zack, he prefers the term “mansiere.” Fancy, I know. But that’s what he became when his wife was diagnosed with this rare form of breast cancer, right after having a baby, and at the same time the entire world was entering a pandemic.

A baby, breast cancer, and a global pandemic

When Marnie started having pain in her left breast, doctors originally diagnosed it as mastitis — a common infection for women who breastfeed. She was put on antibiotics for quite a while to no avail. And because we were in a global lockdown, she mainly had to see doctors over video chat. Finally, after a few months of nothing working, she was finally diagnosed with inflammatory breast cancer (or IBC) — which is commonly misdiagnosed due to how rare it is.

They learned it was Stage 4, metastatic, and triple negative, the most aggressive form of cancer. What did they do? Cried. And cried. As one does. It is probably one of the most shocking things to hear and, in fact, you really tend to hear nothing else after being told this type of information.

Worst things to say to someone with breast cancer

When Marnie and Zack started to tell friends and family members, they received an outpouring of support. But, as I experienced back in 2014 when I was diagnosed, sometimes people don’t know what to say. They just want to try and offer comfort, and it can be a little awkward. A day after I was diagnosed, a good friend, in her most excited voice said, “Oh cool! You can get a new rack.” Um. No, not cool. I like my rack. Zack shared that he and Marnie had a friend who in trying to comfort them, compared Marnie’s breast cancer to their own break up. And this actually did comfort them, because of the accidental humor that resulted.

Best things to say to someone with breast cancer

So what do you say to a friend or a loved one when they are diagnosed? You can say nothing, just being there and hanging out and acknowledging how tough it is, is comforting enough. Marnie revealed her prenatal yoga teacher was the one that said the most supportive thing to her. She was dropping off food, so they didn’t have to worry about cooking. And she said, “What do you need to give voice to, that you haven’t been able to?” Zack revealed that when she said that they both cried.

When it comes to cancer, laughter is the best medicine

Zack reveals that they have “a good laugh and a good cry almost every day.” In fact, he remembers the moment Marnie told him she had cancer. His first thought was, “Oh no, Alexa.” Come again? It turns out, Marnie and Zack had been debating whether to bring Amazon’s digital assistant, Alexa into their house, which they had done so that day. And Zack felt so bad that poor Alexa had gotten put in the cancer house. Don’t worry Alexa, you’ll be the breast digital assistant, ever.

Boob pics

Is that a boob pic or are you just happy to see me? What? So Marnie and I both learned that when you get diagnosed with breast cancer, you take a lot of photos of your boobs. For me, my left boob got burned pretty badly during radiation — and I wanted to remember it?! Whatever, I had cancer, leave me alone. Of course, the next day Apple had a security break, so I worried my very, very brown boob photo was now floating in the public ether. Oops.

For Marnie, she remembers that one day she accidentally sent a pic of her boob to her Dad. Awkward. Hi Dad. Dad? Dad? “Are you there Dad, it’s me, Marnie’s Boob.”

How cancer changes intimacy and relationships

Marnie shared that intimacy has changed slightly in that, the cancer is never not there for them. Zack says they have to remind themselves to compartmentalize. He has to turn off his medical brain in those intimate moments. “Nothing will kill a mood, more than a medical exam.”

“Some of the only moments that I do forget (that I have cancer), is when we’re able to be intimate.” In fact, Marnie revealed that for them emotional intimacy has gotten deeper. “One of the biggest things we did for each other was just hug and sob.”

Inflammatory breast cancer facts

As for what Marnie has learned that she wants people to know about Inflammatory breast cancer. Here we go:

1. Inflammatory Breast cancer makes up about 1-5 percent of all breast cancers, according to the American Cancer Society.
2. IBC tends to occur in younger women (younger than 40 years of age).
3. IBC receives a very small percentage of research funding
4. There are treatments, but no cure for IBC…
5. For more information and support on inflammatory breast cancer — and ways to help patients and their families — check out The IBC Network Foundation.

Be your own advocate, if something doesn’t feel right, find doctors, people, who will listen to you and help you find out what’s going on.

I asked Marnie and Zack what their theme song for her boobs is right now? “It’s gotta be, I Will Survive,” Zack quickly replied. And then they sang it, and I mean really sang it, from the bottom of their boobs. (Men have breasts too!). “Marnie and the Mansiere” might just be the best breast cancer band you will ever hear.