What It’s Like to Lose Weight Without Wanting To—From a Woman Dealing With the Side Effects of Breast Cancer

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I first want to acknowledge that losing 15 pounds is not particularly devastating. Yet the weight loss I experienced was an undesired side effect of stage IV metastatic breast cancer. It was brought on by the cancer pushing inside my abdomen, making it physically impossible for me to keep down solid food.

It felt like there was a lid at my diaphragm, which covered my stomach and blocked anything from going down. I would feel a pang of hunger and rush to eat one or two bites, and then have the sensation that there was no room left for more. I was, essentially, starving. I went from 110 pounds down to 95—about 15% of my weight—in a couple of weeks.

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I had no energy. I struggled to climb the three floors to my apartment. I’d start to get ready for work and immediately need to lie back down because the strength it took to shower was all I had. On the days I made it to the office, I prayed no one would notice that I never left my desk or that I was drinking Ensure for lunch.

I tried desperately to consume more calories, one night sending my husband out to a friend’s apartment for weed in the hopes that the munchies could supersede the cancer. (It didn’t work.) I spoke to a nutritionist, who told me to eat anything I could—ice cream, heavy cream, whatever—to put on weight in order to function. As we waited to see whether the chemo I was undergoing would shrink the cancer and allow my appetite to return, I continued to shed pounds.

Ordinarily, my body is muscular and somewhat pear-shaped; I’ve always had a butt. I’m small but not remarkably small. And aside from the freshman 15, I’ve been roughly the same size for a long time.

But now, very suddenly, my body was different. My ribs protruded and my butt flattened out. Getting dressed was upsetting. I’d open my closet, which was full of things I loved to wear, and find only one or two items that still fit. I went to H&M to buy inexpensive options, but how much money did I really want to spend on a second wardrobe? These weren’t my skinny jeans, these were my emaciated jeans.

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If one thinks of weight as a spectrum, being somewhere in the middle isn’t noteworthy. From the middle, inching toward the extreme in either direction, there is a point at which a person's size does become become a defining trait, like having pink hair. A friend who is 6’7” tells me that strangers come up to him to say, “Wow, you’re so tall.” Since being tall isn’t generally considered a bad thing, people presume that this comment isn’t rude or inappropriate.

In New York City, where I live, it’s the same with being thin. Suddenly, people I barely knew felt that my size was an acceptable conversation starter: “You’re so thin.” But think if I was on the other end of the spectrum, inching toward obesity—would anyone ever say to me, “You’re so fat”?

The comments I received varied, but plain statements of fact became preferable. The receptionist at the dance company where I work (and where I am not out in my illness) once said, “You’re so thin, are you doing okay?” I made up a lie about losing weight when I’m stressed. (If that were true, it would mean I’d hardly ever been stressed before.) Disturbingly, a donor to the company told me I looked “wonderful.” Thank you?

At the bodega on my corner, I was buying an avocado after my appetite had returned, and the clerk remarked, “Is this dinner? That’s how you stay so thin.” I’ve lived in my neighborhood for four years and I saw this man often, but never before had he said something like this. I felt the urge to defend myself by explaining that the avocado was going to be sliced on top of a burrito and that I was planning to have ice cream afterwards.

I also felt the urge to snap back, “I have cancer; that’s how I stay so thin.”

My weight loss, however, finally stalled. Once we found a chemo that worked, I was able to eat again. It was a thrilling time. I needed vitamins, but I also needed fat, so I let myself indulge in anything I wanted. My husband and I visited his mother and it was like something out of Hansel and Gretel—being fed bread and butter and pie after every meal, while they watched with satisfaction. I discovered a local bakery that stayed open until midnight and I tried a new pastry every night. My macaroni and cheese consumption would have made Liz Lemon blush.

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It took me 2-3 weeks to lose the weight and about 2-3 months to put it back on. Now my clothes fit, I have energy and color, and my butt came back. I know my body better, what fuel it needs and how much it can withstand.

Now that I’m closer to the middle of the spectrum, I don’t receive any out-of-the-blue comments on my size. While the cancer is under control, it's not in remission. So if this whole thing happens again, as the current drug someday loses its effectiveness, I’ll be more prepared for the comments and questions, with a good retort to the next person who says, “You’re so thin.”


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Breast Cancer – Health.com