My five-month-old baby girl was shrieking into my left ear when the oncologist sat down. Our friends had come with me to watch her in the lobby during my appointment, but she was having none of it. So we all piled into the exam room and heard him say the words: “You have bone marrow cancer.”
Everyone was staring at me. The baby was screaming hysterically. All I could think was, Let’s get on with it; this kid needs a bottle.
The first trimester of my pregnancy had been pretty uneventful, but during my second trimester, my blood pressure started creeping up. On a visit to the hospital to have it monitored, doctors found elevated levels of protein in my urine—often a sign of preeclampsia. But something didn't quite add up. My high-risk OB told me she didn’t like how much protein they’d found. She wanted me on bedrest at home for the duration of the pregnancy. No going to work, no major chores, and constant monitoring. Ideally, she said, the protein in my urine would go away within a few days of having the baby, which is how preeclampsia usually resolves itself, but we had to make sure. She recommended I visit a kidney specialist as soon as my pregnancy was over.
On bedrest, I did a lot of puzzles and pretended I was going to knit a blanket. I was induced at 37 weeks (i.e., eight and a half months), and the baby arrived, no problem. She was tiny, strong, and stunning. We named her Rose. A few days later, the high-risk OB called to remind me to follow up with a kidney doctor. “To check on that protein,” she said.
We were getting used to a new normal at home. The dog was licking Rose nonstop, I was regularly peeing my pants before I could make it to the bathroom, and nobody was sleeping. At some point amidst the chaos, I logged onto my insurance website and found a kidney doctor who was covered by my plan. After lab work, I sat down with my doctor to go over my test results. The protein was still there.
We sat for a moment. “Can you start dieting and exercising?" she asked. "Try to lose some weight.”
Huh? I’d been through dozens of medical appointments throughout nine months of pregnancy, and no one had mentioned my weight. But I didn’t want to argue with her—she was the expert. “Okay, yeah. I can do that,” I said.
I didn’t tell her that the idea of losing weight to fix this current problem sounded like a bunch of bullshit.
“Take the baby out for walks, eat less salt, nothing from a box, eat plants," she instructed. She didn’t have to explain it to me. As a 38-year-old woman, I was painfully well-versed in how to lose weight. From the media to my own family, the world constantly encouraged me to stay obsessed with my size, and like literally every other American woman I knew, I’d spent a lifetime consumed by how I looked, and haunted by the number on the scale. It was inescapable.
I didn’t want to sound defensive, so I didn’t tell her that I already knew all about weight loss, or that I’d lost 115 pounds with diet and exercise at an earlier time in my life when my body image had been an emotional burden for me. I didn’t tell her that I lost that weight for vanity and to please my family, not for health reasons. I didn’t tell her my weight had never actually been a health issue for me, because I didn’t think she’d believe me. And I didn’t tell her that the idea of losing weight to fix this current problem sounded like a bunch of bullshit.
I didn’t tell her any of that because that’s not the kind of thing a doctor prescribing weight loss wants to hear. So I just played along. “And if I lose weight, the protein will go away?” I asked. “Yes. Lose weight, the protein will go away. Come back four months from now.”
I was incredibly worried when I left her office. If dropping pounds was what I had to do, I’d do it, but it didn’t feel right to me. I had a new baby! I was barely sleeping! I definitely didn’t think I should be on a diet. And quite frankly, it would be a significant and unwelcome shift for me to start thinking like that again.
A few years earlier I’d made a decision to stop focusing on dieting, and I was genuinely happier for it. I’d already spent decades fixated on my body, always reaching to get rid of those next five pounds. I didn’t want to think about it anymore! I wanted to lift my focus up and away from my own belly button, and out toward the rest of the world. I’d started to feel allergic to the whole topic. I was grossed out by people posting about their sad food plans on social media. I was turned off hearing about people’s personal exercise goals. When I paid careful attention, I noticed we were all talking endlessly about our bodies, our weight, and the latest diet, almost as if we were in a cult. Yet we all looked the same as always, not much fatter or thinner than we’d been the year before.
Concentrating on weight seemed like a superstition for some people. Like rubbing a rabbit's foot. Like if they just made one more joke about their big ol’ butt while eyeing that second slice of pizza, they’d keep the fat demons at bay another day. Most people would say they’re just being conscientious about their health, but I was starting to think people were truly more worried about looking fat.
What if we all woke up tomorrow, and the entire country had stopped obsessing about weight? What if we all suddenly quit buying into every aspect of this toxic diet culture, and decided to accept ourselves, as is? Would we become huge, giant, fat, unhealthy monsters? Or would we gain a few pounds, lose a few pounds, plateau somewhere comfortable, and probably end up turning our attention (and our bank accounts, and our daily energy) to higher callings? I wanted to believe the latter. And so I consciously let go of my weight obsession.
But here I was staring down the idea of weight loss yet again, this time as a prescription. I spent the car ride home from the doctor's office committing myself to bucking up and putting my postpartum self back on a diet. And then I spent the next several weeks storming around my house, incredulously exclaiming, “Lose weight?!” to my exhausted husband, and glaring into the fridge while wrangling a wiggly baby. I kept coming back to that gut feeling that weight loss wasn’t going to address my health problem. I knew my body. I’d always been strong and resilient. I’d been quick to heal after the baby was born, and I was feeling pretty good. Devastatingly tired, but good. I just couldn’t shake the strong intuition that the protein in my urine wasn’t hanging around because I was too fat.
After a month of this, I finally decided to get a second opinion. This doctor was also very concerned when she saw my lab results. She didn’t know what was causing the protein, she admitted, but she was committed to finding out. I asked her, “If I lose weight, can I get rid of this?” She said, “There’s nothing diet or exercise can do to touch this much protein.” It was shocking to hear her say those words, but I wasn’t surprised. “I can see why you’re worried. Let’s biopsy your kidneys.”
Countless women have told me they are being misdiagnosed as “too fat” when they are literally dying of something else.
The kidney biopsy was a miserable affair. The results came back totally clear at first; my kidneys were healthy. But that meant something else must be wrong. A few weeks later, more detailed results came in. They found something in my urine called a kappa light chain—when the doctor called to explain the results, all I heard was the word oncologist. When I met with the oncologist, he biopsied my bone marrow, which was another truly nightmarish ordeal. By the time I got the results, with my baby wailing in my ear, I already knew.
I was diagnosed with multiple myeloma in late July. Within a few weeks we found a fantastic specialist who laid out a treatment plan that my husband and I feel good about. I had some eggs retrieved and embryos frozen so that we can maybe have another baby when this whole mess is over, and I started cancer treatment this month. It’s okay so far. I like the nurses and sometimes they have cake.
I’ll have six months of chemotherapy alongside high doses of steroids to attack the myeloma cells, which they hope will put me into remission. There is no cure for multiple myeloma, but my prognosis is good, and I’m determined as hell to get this crap out of my body and get back to business as usual. I have more important things to be pissed off about. As I sit on the other side of this diagnosis and consider how the last couple months have unfolded, it’s humbling to realize that none of my other routine lab results came back abnormal. I never felt sick—I still don’t. If I hadn’t been pregnant, nobody would have been testing my urine, and they probably wouldn’t have found this cancer until it was way too late.
And if I hadn’t gotten a second opinion? Well, I’m sure I would’ve spent the summer desperately trying to lose weight, eating weird fake-ice-cream treats and more spinach than is reasonable, and then feeling incredibly guilty when I couldn’t lose enough fast enough. I’d have spent the first few months of my daughter's life obsessed with my calorie intake and daily steps. I’d have driven myself into the ground trying to make it all happen. Then I’d have gone back to that kidney doctor, hopeful things were back to normal, only to inevitably discover that the protein was even higher than before, and that I’d been allowing bone marrow cancer to steadily grow throughout my body for months and months.
Since I started sharing this experience, I’ve heard from an unfathomable number of women who have similar stories. From breast cancer to ovarian cancer to Lyme disease to massive blood clots—countless women have told me they are being misdiagnosed as “too fat” when they are literally dying of something else. If you think something is seriously wrong with your body, and your doctor tells you weight loss is the solution, please get a second opinion. Please. Trust your instincts. Listen to your body. And don’t give up until you are satisfied with the answer.
Your intuition is one of your many magical powers. Hone it and never hesitate to rely on it, because your intuition might just save your life.
Jen Curran is a writer in Los Angeles. Follow her on Twitter at @jencurran
Women in the body-positive space are reclaiming the word fat for what it is, simply an adjective that describes their physical attributes. No longer is it—or should it be—a dirty word. In The 'F' Word, we explore what it's like to be a plus-size woman in America today. It's time for an honest conversation. Read more stories like this here.
Originally Appeared on Glamour