If all the world is a stage, then such is life. So many of us want the world to see our front stage, the performance, sometimes raw and real, but so many times simply an act, as we conceal what is really going on behind the curtain, what is happening backstage. Because if you are truly living, everyone has been there. Peek through the door, inside the curtain and there is likely something you could share to provide courage, hope or inspiration to another human being.
Everyone has a story.
I am Mark Brodinsky and this is the Sunday Series.
The Sunday Series (66): Rare
“It definitely opened my eyes and put me in tune to other people. Be nice and sensitive to everyone, cause we don’t know what they are going through.”– Erin Levitas
When you are in your 20’s it’s not always easy to go that deep with your thoughts. Life is egocentric, the world is your oyster. You are about to open it and dive in to the unchartered, but hopefully exhilarating waters of a career and a new, independent existence. One filled with questions which can only be answered by the experience of living your dream.
Until that dream is put on hold.
With college graduation on the horizon, and at the still tender age of 22, Erin Levitas and her dream are on standby. It was back on March 5th, when Erin first felt the pain and the mass in her abdomen, she thought it really wasn’t a “big deal, she would be totally fine”. “I’m a healthy college senior, I didn’t think anything could happen to me”, says Erin, “but when I went into surgery, it felt a lot worse than I thought it would be. The doctors immediately knew it was cancer. They told my parents and then the next day the doctor came to talk to me. With my parents each holding my hand on either side of the bed, the doctor told me everything that had happened. He said they found a large tumor and it was cancerous and it had spread throughout my stomach. I didn’t really hear any of it. And then five minutes later I asked him, ‘you said I have cancer?’. He said ‘yes’, then I broke down. It was my turn to process it.”
It took nearly a month for the actual diagnosis. And it is Erin who explains it best in the journal on her Caringbridge page:
My diagnosis is called high-grade endometrial stroma sarcoma, not of the uterus. To put this in simpler terms (trust me, my PHD from Grey’s Anatomy has not prepared me to deal with all this medical jargon), I have a cancer that is created in the GYN region of the body, but it is located in my stomach instead of in my ovaries or uterus. This is extremely rare, I am one of only a handful of people to ever have this form of sarcoma but this shouldn’t come as a surprise to anyone who knows me well since I have always been very unique (I like to call myself the trendsetter of cancer).”
Any journey through illness can be tough, but as evidenced by the excerpt above, Erin is handling it with honesty, with humor and with the fight building inside her, to tackle this head-on. After her surgery, Erin notified the staff at Wake Forest University where she attends college, and they thought there was no way Erin would return. But not long after going under the knife, where the doctors cut her entire stomach open to remove as much of the cancer as possible, Erin was back on campus.
It was a brave move, but also a somewhat unsettling one. Post-surgery Erin was having trouble walking, so she was making her way from class-to-class on a scooter, having someone help carry her books then sometimes popping pills in the middle of class when sitting for too long became uncomfortable. She says she could hear the comments from some of those around her that she looked too “normal” to be riding a scooter or taking pills in class. Erin says not everyone could understand, “just because I look normal on the outside, doesn’t mean I’m not fighting a battle on the inside.”
Remember, front stage vs back stage.
“I don’t look sick”, says Erin. “Even my friends said I can’t believe you had major surgery a week ago because you look so great. People don’t really know what is going on. It’s hard for my friends to comprehend because I look healthy and talk to them about everyday stuff, so it’s hard for them to believe someone like that could be sick.”
But whether she looks sick or not, Erin’s friends, especially those at Wake Forest and her Alpha Delta Pi sorority sisters have been unwavering in their support. “When I went back to school I couldn’t go to sorority formals, but my sisters have been so nice and accommodating, doing movie nights with me and other things to make me feel better.”
And then there is the Gamma Omicron chapter of Theta Chi, a fraternity on campus. In the next few weeks, as soon as the doctors create the proper “chemo cocktail”, Erin will begin a long run of chemotherapy treatments, as much as six months to a year. In a demonstration of compassion and support for Erin’s upcoming challenge, some of the boys in Theta Chi shaved their heads as a show of solidarity with their “little sister”.
And there are the friends from back home in Baltimore. Erin says her best friend Claire has been there every step of the way getting sarcoma awareness bracelets and belly-button rings to raise awareness. Her high school friends from St. Timothy’s have reached out to show their support as well.
And of course there is family. Erin says her older brother Harris (who is only two years older) has been, in her words, “absolutely amazing.” She says, “he takes me out a lot and makes me feel normal and not like the sick kid. He doesn’t live in our house anymore, but he stops by and hangs out. He sent me the cutest gift, flowers in the shape of a white dog, because we both love dogs.”
Erin says her parents have been dealing with all of this really well. “They have been there for me every step of the way”, she says. “My favorite thing they do is they don’t treat me any differently. When they found out I was sick they could have looked at me as if I was dying, but they don’t. We joke around about everything. But they will change their plans in a second for a new doctor appointment, or if I am not feeling well.
And my Mom, wow, my Mom. I don’t have children so I don’t know what it feels like, but I can’t imagine what it’s like to watch your daughter go through this and not be able to fix it. You can’t put a band-aid on it and fix it. But she just holds my hand and makes me laugh and smile. She is my best friend.”
And Erin’s “best friend” has already been on some interesting trips Among the numerous doctor visits, Mom and daughter have traveled to the Dana Farber Cancer Institute in Boston and are expected to soon visit Sloan Kettering in New York. The specialists from both centers are now looking at tissue and tumor samples and trying to determine if the cancer matches the original diagnosis ,or perhaps, just perhaps, while still stage 3 and a sarcoma, it is not the rarest of cancers.
This coming week will tell the tale and it will be huge for another reason.
While Erin might not know what it’s like to be a mom, she knows one day she wants to have that chance. So, in a move that shows tremendous maturity and foresight for the 22-year-old, Erin has been going through fertility treatments. The goal is to harvest as many eggs as possible and freeze them for the future, so one day, Erin can have children of her own. The upcoming chemotherapy treatments could severely damage any chance Erin has for producing healthy eggs, so for weeks now Erin has been getting hormone injections and sonograms and everything looks positive. As many as 30 of the eggs look viable and tomorrow morning (Monday, April 20th), the egg retrieval process is expected to take place. It is Erin’s best shot at immortality, to one day become a mother.
The upcoming week is also expected to bring the insertion of a port for the upcoming chemotherapy treatments (Wednesday) and sometime this week, word from the cancer specialists at Sloan Kettering and Dana Farber on the final cancer diagnosis. From harvesting the best chance to create life down the road, to finding out how to save her own, this is a week Erin won’t soon forget. And she is looking forward, not back and certainly not being overwhelmed with her current circumstance.
“I just feel like I have so much left to give to other people and to experience the world and what is ahead of me in my career and with my family. There is so much left to do, so much I haven’t done and haven’t said, and I look forward to the future.”
May 18th is graduation day from Wake Forest, Erin plans to be there. She will graduate with a bachelor of arts in psychology, with honors and has already been accepted by the University of Maryland Law School, but she is deferring for a year as she undergoes treatment. The coming months will be quite a ride.
And if you so choose, Erin is asking you to go along for that ride. You can share her journey in the journal on her Caringbridge page, (http://www.caringbridge.org/visit/erinlevitas). If I might be so bold as to stand in judgement, and not that any story deserves more attention than any other, but Erin is a terrific writer, taking you into her world with the perfect mix of emotion and humor. She is simply telling her story and when you do it in this way and speak from the heart, everyone who has one will buy in.
I’m sold. Erin, I wish you all the best!
Until next time, thanks for taking the time.
Mark Brodinsky, Author, Huffington Post Blogger, Speaker, Emmy Winner, Financial Services
Author: The #1 Amazon Best-Seller: It Takes 2. Surviving Breast Cancer: A Spouse’s Story
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