What it’s like to live with stage 4 cancer in your 30s

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Determined advocate for cancer research, Rebecca Scheikman, shares her story

SOURCE: Rebecca Scheinkman

"Guys, I can't go get margaritas with you. I have cancer." These were the words that stumbled out of Rebecca Scheinkman's mouth as she wrestled with the news no woman wants to hear. Especially a woman six days shy of her 33rd birthday.

One second she was carefree and on her way to celebrate Cinco de Mayo with coworkers. The next, she was processing her fate. What would her life become? Where could she get help?

"I called my mom, who came into the city from Jersey and we went and got sushi. We were eating California rolls, deciding what we should do next," said Scheinkman.

What they didn't know then was that Rebecca's cancer was already quite advanced. By the time she noticed a lump in her breast, the cancer had already spread to her lungs, sternum and eight regions of her brain. She had Stage 4 metastatic breast cancer.

It was at during that eerie lunch that she decided to contact a researcher at Memorial Sloan Kettering, who had led a study on survivors of childhood cancer in which she was a participant.

19 years prior, Scheinkman was a budding freshman in high school who was diagnosed with leukemia. She lost her hair, her energy and almost lost her social life if it weren't for a very understanding group of young ladies she befriended.

While she was going through it, she longed for a sense of normalcy and to be like other girls her age. To be able to not feel tired at the mall, play in her hair and go on dates.

Thankfully by her junior year, she got her wish. Her hair grew back and she was able to reclaim what was left of her high school years.

"Once I was cured it felt like I was set free to the world," said Scheinkman.

She got accepted into George Washington University and did her very best to live a life that was not defined by cancer.

She never spoke a word about her experience with leukemia while in college. Not even to her closest friends, until a few years after they graduated.

"They were shocked. And they were angry I didn't tell them sooner. And now that's sort of why I am an open book this time around. I feel like I kept it a little too close to my vest. We didn't speak enough about what I was going through at the time and people didn't understand chemo, and the treatments and how I was feeling physically or emotionally. And now I'm doing the complete opposite."

It's more important than ever to share what a young breast cancer patient's life truly is like.

Today, if you saw Scheinkman in person, you wouldn't know that she has stage 4 metastatic breast cancer. You wouldn't know that she's on three types of chemotherapy. You wouldn't know that she just had a double craniotomy in April 2018.

That is, unless, you asked her about breast cancer. Today, she is one of the most vocal soldiers for breast cancer research the disease has ever seen.

Currently, she works 20 hours a week for the NFL in a role created just for her. But when she's not at her day job, she's spends a lot of time advocating for more research on behalf of the metastatic breast cancer alliance, in New York and across the country.

Schienkman has been personally affected by both the lack of research and presence of research at different times in her life.

In 1995, Scheinkman's treatment cured her leukemia, but was not appropriate for a girl going through puberty. Today research shows that the treatment she received as a teenager made her more susceptible to cancer in the two organs that undergo the most change in women during puberty: breasts and ovaries. Teens today are not treated for leukemia the way they once were.

"That's why research is so important. Doctors would have known in 1995 that different types of treatments needed to be closely monitored. Cause at this time the only risk factor I was thought to have had was heart problems."

When Scheinkman was initially diagnosed in 2014, she was thought to have had stage 3B breast cancer. Her doctor's instinct to do a "just in case" CAT scan showed that the cancer had already spread to her right lung and sternum. She was stage 4.

"They would never use the word terminable, but they would never call it curable. It was treatable, not curable," said Scheinkman.

So she began to learn about metastatic breast cancer and along the way she found her voice as an advocate.

"And that's how I got on one of the three chemo [treatments] I'm on now -- through my own education and advocacy. I said I want to try this trial chemo and they [her doctors] let me. After one month, not only did it show great improvement, it showed decreased cancer activity. I wasn't eligible for the trial because I wasn't stable. This medication actually made me stable."

The teamwork between a proactive patient and an open-minded doctor is prolonging her life.

In 2014, when Scheinkman's metastatic breast cancer was first discovered, she was expected to live three years. Today in 2018, as she approaches her fifth year of living with her disease, she has been given an additional gift.

"My nephew was born 11 months after I was diagnosed and my greatest fear was that I wouldn't live long enough for him to remember me or how much I loved him. Now he'll be 4 in April, and I feel secure in that he'll definitely remember Auntie Becca. I can't wait to watch him be a big brother and hold my newest nephew in February."

Despite there not being a corner of her life that isn't impacted by cancer, Scheinkman still experiences joy. She loves an ice blonde latte with soy milk and peppermint syrup at Starbucks. She plans to make it to a New York Rangers game with her dad soon. And most impressively, she's the first one out of all her family and friends to visit all 50 states.

Her spirit is tenacious. It pushes her from one day to the next. But this journey has many difficult days in store. For the days that are harder to handle, she offers these words of advice to any one suffering from cancer:

"Allow yourself to feel what you're feeling, when you feel it. If you feel lonely, or overwhelmed or just tired, own it and feel your feelings," Scheinkman said. "If you don't want to speak to people, they'll understand. And then, eventually, break yourself out of it by thinking about something else, going for a walk or watching TV. And eventually you'll come around again."

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