When Valerie Goldstein lost her battle to cancer at the age of 9, her parents Ed and Sue vowed to help families in similar situations gain easier access to more customized care.


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The Valerie Fund Blog

"Mommy, is that a boy or a girl?"

Posted by Olivia on 3/15/19 1:14 PM

Logically, I know that a healthy, cancer free body is all that matters… I’m just not 100 percent there yet.

Since finishing chemotherapy for Ewing’s sarcoma back in September of 2018, I have been slowly building up strength and easing myself back into a more “normal” day to day life. I still have to finish an immunotherapy trial drug that I was randomly selected for at the time of my diagnosis, so I’m not in college right now.

I’ve been working at a casual restaurant in my hometown, which helps keep my mind occupied and my days busy as I finish treatment. All the while, I have been gaining back the weight, growing back the hair, and building back the muscle that I lost over the past year. And even though the thought of cancer is always looming in the back of my mind, I have finally found myself feeling somewhat normal again.

Then there are moments. Moments that draw me back to the scary reality that has become my life.

“Mommy, is that a boy or a girl?”

When I overheard a little boy ask his mom this while I wiped down their table, my heart sank. Shocked and embarrassed, I just smiled at the two before hurrying back behind the register on the other side of the restaurant.

The question caught me so off guard; it made me start to question the validity of my own self-confidence.

 

Olivia

Image provided by the author, Olivia.  

 

Do I actually look like a boy? Does everybody wonder this when they see me? How could I be so stupid to assume that I look okay without a wig? What’s wrong with me?

 And just like that, all of the painful memories of looking sick came rushing back.

I will never forget the first time my cancer made me feel ugly.

My surgeon had just come to remove the bandages from the surgical site where they biopsied my tumor. It was one of the first times I had gotten out of bed since my biopsy, to go to the bathroom. Still in my hospital gown—as I was not yet a regular who knew to bring many sets of sweats and pajamas—I caught a glimpse of my scar in the mirror.

It was big.

From what I could tell, it looked about five inches long, running down the center of my lower back. The stitches were wide and wretched looking, inflaming my skin to such a degree that I couldn’t figure out where my back ended and my butt began.

I was hideous.

Going from a student athlete, running upwards of 30 miles a week, to a bedridden cancer patient was an emotionally painful transition to make. It was as if overnight, all of the muscle and endurance that I had built over the past few years had just melted away.

People tried to be supportive throughout all of my physical changes; saying things like “you have a great head shape” or “you totally pull off being bald” was a nice gesture but never truly resonated with me. Because when I looked in the mirror all I could see was that my legs had turned into sticks, my butt was practically concave, and my ribs were becoming more prominent with each coming day.

Managing these insecurities wasn’t always easy but I dealt with it by avoiding mirrors and by wearing baggy clothes. Over-sized sweats, beanies, blankets, and surgical masks became somewhat of a shell for me to hide behind throughout chemotherapy. And as much as I resented having to lay in a bed all day or use a wheelchair, I found comfort knowing it ensured people wouldn’t be able to see every unflattering angle of my deteriorating body.

The second time cancer made me feel ugly happened once prom season rolled around. I was in the middle of treatment and shopping for dresses was a nightmare; I didn’t know how to dress this sickly body of mine and I didn’t want to be stared at in stores. But above all, I just didn’t want to have to face the reality of what my body looked like.

 

Olivia 2

Image of author in prom dress. 

 

What should have been a fun activity turned out to be a nightmare. Finding a dress that would mask chemotherapy’s abuse was almost as difficult as mustering the strength to stand up long enough to try one on.

Eventually, I came to a decision on a dress and was hopeful that alterations would fix everything wrong with it and that come prom day, I would look like me—

—Three months later, cut to me crying in the mirror at a local tailor’s home.

Standing in front of a mirror and seeing a skinny bald girl, who still couldn’t fill out her prom dress after alterations, staring back at me was heartbreaking. I didn’t want to look like that, and I most definitely didn’t want anybody to see me like that. I was embarrassed, not of the cancer per se, but of the stares that I knew would come if I didn’t pass as healthy at prom—if I didn’t pass as me.

Sure, I could stand in front of a mirror, see the bald head, the ghostly white skin, the bruises, the scars, the sunken facial features, and still see me. I could look past all of the physical changes but I knew that a lot of people couldn’t.

So much of our identity is reflected in our appearance and for the past 15 months or so, I’ve had very little control over mine. Every person I caught staring, every mother I heard scold a child for pointing, and every stranger I received unsolicited life advice from reminded that my cancer preceded me and that I was a spectacle. So while it is true that much of the distress I have felt over my appearance stems from the desire to feel beautiful, most of it stems from the fear that people will see my cancer before they see me and make assumptions.

Overhearing that little boy question my gender was the third distinct time that cancer had made me feel ugly and I’m sure it won’t be the last. Logically, I know that a healthy, cancer free body is all that matters and that these superficial insecurities shouldn’t affect me so much. I know that after everything it’s been through, I should just be grateful to have a body that works and I should love it.

I’m just not 100 percent there yet… But I’m working on it.

 

If you would like to support Olivia’s walk team please donate to https://thevaleriefund.org/Walk2019/team.php?team=2115 


ABOUT THE VALERIE FUND: After their nine-year-old daughter Valerie succumbed to cancer in 1976, Sue and Ed Goldstein were determined that no family should have to travel great distances to receive state-of-the-art medical care. Today, more than 6,000 children with cancer and blood disorders benefit immeasurably by receiving their medical treatment close to home in a child-centered environment. The Valerie Fund ensures they do not have to rely on insurance reimbursements to receive a range of customized therapeutic services that enhance their quality of life. For more information, please visit www.thevaleriefund.org.

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Topics: education, Pediatric Cancer, Blood Disorders, pediatric, cancer, childhood cancer, awareness, oncology, new jersey, nonprofit, advocate, patients

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