I was diagnosed with a brain tumor called a glioblastoma in February (you can read more about my story here), and some things began to change overnight. For one thing, I immediately had to begin processing that I was a 24-year-old who couldn’t look too far into the future. Glioblastoma is rare and dangerous, and while I don’t like to think about myself in terms of “averages” — because anything can happen — the median survival from time of diagnosis is typically only 15 months.
One thing that didn’t change right away was my weight. Or at least I didn’t notice it for a while. Then, around the start of summer, I was looking at some old pictures one day and it hit me. I think the shock came mostly because the weight crept up on me very, very slowly in the beginning, so I wasn’t really paying attention to it. And then all of a sudden I'm looking in the mirror and thinking, “Wait, what happened?” I’m not going to lie, it was pretty jarring at first.
I take steroids daily to help reduce swelling around the tumors and help me manage some of the symptoms. But the steroid that I’m on — called Dexamethasone — can be associated with weight gain in some people. As my dosage has been increasing, so has my jeans size. I know that cancer affects everyone differently — some people lose a lot of weight while others end up gaining. So it’s definitely possible that my care team didn’t know for sure how I’d react. On the one hand it would have been nice if my doctors said, “We're going to increase this medicine and this is what could happen,” but on the other hand, maybe anticipating the weight gain would have just made me more anxious.
Before getting sick, I was always very thin, even though I didn't always think that I was. I didn’t have a diagnosed eating disorder, but I was constantly preoccupied with my weight. Looking back at old pictures of myself in high school and in college, I remember being so self-conscious. I’d scroll through my Instagram feed and wonder, “Should I have posted this? Should I not have posted this? Do I look fat in this picture?” Now it just baffles me that I was having those thoughts, because I can see how beautiful I was.
I wish I could go back and tell that person — and any other girl who is consumed with similar thoughts about her weight — that it just doesn't matter. Culturally we’ve been taught that it’s the most important thing, but it really isn’t.
On the absurdity of women's clothing sizes
I was shopping recently and as I picked up whatever the extra large was in each store, I thought, “There's no way this is going to fit me!” I couldn’t believe what stores were calling ‘extra large’ — they looked like a small or a medium to me! Jeans have been particularly tricky; the only brand that I’ve found to work for me so far is Abercrombie. And just this morning I ordered a pair from Good American, the clothing brand founded by Khloe Kardashian that carries sizes 00 to 24. To be honest, I never thought I would need to order something that was considered ‘plus size’ but I’m not so concerned with the size on the label. If it fits, if it’s cute, and it feels good, I’ll take it! It just feels very freeing to know that the size is not a big deal.
On the importance of purging your closet of clothes that don’t fit
I’m currently in the process of trying to get everything out of my closet except for what fits. It makes me more comfortable to know, “This is my closet and these are the things I’m able to wear for today.” It’s a lot better than opening the drawers and having to do a whole routine every morning, trying to figure out what fits and what doesn’t. I don’t want to torture myself that way!
I moved a lot of clothes down to bins in the basement and if they fit me one day and I need smaller jeans, okay, great, I'll go downstairs and I'll get them. I’ve also given a lot of clothes to my sister, who is a year older than me. I’ve given her so much that I’ve started to think, “Maybe I should keep some of this stuff, because who knows what’s going to happen?” But it's not something that I need to focus on today or worry about.
On cancer fatigue and comparing herself to others
My sister and I went to Laguna Beach in California a couple of weeks ago. We were staying at this hotel that was on the top of a hill, and every time I had to climb up the hill, I was so out of breath. I didn’t beat up on myself, though — honestly, I was able to laugh about it even as I thought, “I can't believe this is my life now!” But it was definitely an eye-opening moment where I realized that people do this every day and they're fine, and I couldn’t. As much as I try to live life as “normally” as possible, and not focus on having terminal brain cancer, these are the seemingly small moments that sneak up and remind me that my life is different.
During the vacation, we were also spending time by the pool. At one point I looked around at everyone in their swimsuits and I was like, “Okay, I'm a lot bigger than everyone here, but I don't care.” You kind of have to talk to yourself in those moments and put everything in perspective — to say, hey, it’s not a big deal!
On not depriving herself of the pleasure of food
In about a week, I’m going to have a surgery to clean up the swelling around one of the tumors, or possibly remove it altogether. This swelling is the culprit that’s causing my current negative symptoms. But before I knew I was having this surgery, my mom and I were planning a trip to Florence. It’s where I studied abroad my junior year, and I really wanted to go to Europe one last time. When I think about being back in Italy, the plan is to eat all the gelato — literally, everything. That was pretty much the point of the trip — to go and enjoy all of the delicious food. I’m not sure when we’ll be able to make it, but I can promise you that I’m not going to be worried about how many calories are in the pasta when we do.
On getting to a place of body acceptance
People ask me how I’ve gotten to a place of body acceptance, and I honestly don't know. I guess I looked at the situation and said, “You know, Rachel, there's really not a lot I can do about this right now. This is where you are today so let’s just go with it!” It comes down to this: I only have a certain amount of time left, so why would I want to waste it being upset about my weight? I’d rather focus on being with my friends and my family and doing things I enjoy.
Don’t get me wrong. It’s not like I’ve abandoned all hope about losing some of my “tumor weight.” I know that this can only help my physical health. Once I’m off the steroids, some more exercise and some new eating habits (minus the Florence pasta of course) will go a long way. But no matter what, I refuse to have my mental health dictated by the numbers on the scale.
I understand that it isn’t so easy for a lot of people, and I totally feel for them. There’s definitely a lot of pressure to look like the images that are filling up our feeds. When my friends make comments about their weight or wonder if they look fat, I just want to grab them and say, “it doesn't matter!” — which it obviously does to them. People can tell you, “Oh life is precious — you don't want to waste moments feeling bad about your body.” But those words don’t always “click” until you have an experience that forces you to realize just how true they are. I just hope that other people don’t wait for a terminal brain cancer diagnosis to realize that their worth is not determined by their weight.
This article is for informational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please keep in mind every individual’s situation is different, and you should not take any actions concerning your body and well-being before consulting with a healthcare professional.
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