Facing body image and MBC: A shifting journey

For the first four decades of my life, I lived in a thin, disease-free body. I don’t think that I recognized the privilege inherent in that body until I was no longer thin, no longer disease-free.

A lifetime of body image issues

In my teens and early twenties, I was very thin, a size 0 or 2. Like nearly every other woman in this society, I could find infinite faults with my body. My arms were too large, my thighs too fleshy, my hips too narrow, my waist too wide. As a college student who took a full load of classes while also working part-time, I was constantly busy and often only ate one meal per day. Law school in my mid-twenties led to a more sedentary lifestyle, with much of my time devoted to reading hundreds of pages of case law nightly, and I was consequently eating fast food between classes. I gained about thirty pounds in those three years, putting me squarely in a “healthy” BMI and a size 6. I maintained this size until the birth of my son in 2012 when I was 34. After he was born, I was able to get down to my pre-pregnancy weight, but after he stopped breastfeeding, the weight started to creep up and then pile on. It felt like my body went haywire, and over the next several years, nothing I did would get me back to where I was or where I wanted to be. I now wonder if this was when my cancer started to grow undetected, a microscopic assassin wreaking havoc on my body, disrupting my hormones and causing this weight gain.

I was going to the gym regularly, doing Body Pump and PiYo; I was intermittent fasting and eating a high protein, low carb diet. I was in good physical shape but still could not reach my ideal weight. Then the pandemic hit, and I exercised less, ate more takeout meals, and drank more wine. By the time I was diagnosed with metastatic breast cancer (MBC), I was at my highest weight ever.

Diagnosis and shifting priorities

In January 2022, when I was first diagnosed with stage II breast cancer. I met with a surgeon immediately, and we discussed lumpectomy versus mastectomy, as well as port placement in preparation for chemo. I expected hair loss from chemo, surgical scars, fatigue, nausea. I expected that I would look like a cancer patient, that strangers would look at me and immediately recognize what I was going through. I thought that any body image issues I would have related to my diagnosis would be related to this image of the cancer patient.

Even though the guidelines did not require one in my case, thankfully, my oncologist was thorough and sent me for a PET/CT scan. The scan showed that my cancer had already metastasized to my bones—I had several spots on my vertebrae and pelvis. I now had a stage IV diagnosis. So, I would not have breast surgery, would not have intravenous chemo. I would not appear to strangers as a cancer patient.

MBC is not curable, so the goals of treatment change from curing your cancer to keeping your disease from progressing while maintaining the best possible quality of life. For me, having hormone receptor-positive cancer meant that my first line of treatment would be oral medications that target the cancer’s hormone receptors. To the outside world, I would appear healthy—I would not lose my hair, would not look weak, sickly, skinny. As it turns out, I would have weight gain and other body changes instead. My friend Stefanie put it best: People see me getting fatter and grayer and think I’m out here living my best life. There is a strange dissonance in being someone with a stage IV diagnosis, who must take medications that cause many side effects like fatigue, joint pain, anemia, insomnia, brain fog, and a compromised immune system, but who presents to the outside world as a healthy person. MBC is in many ways an invisible illness. In addition to people not seeing us as sick, we are often not recognized in the larger breast cancer community. We are the elephant in the room, the thing to be feared and often ignored. Even though breast cancer only kills when it metastasizes to other organs, and even though 25-30% of all people with early-stage breast cancer will have a metastatic recurrence, only about 5% of the funding for breast cancer research is dedicated to MBC.

The weight of change

Due to the metastases in my bones, my L2 vertebrae fractured shortly after diagnosis. I was initially in excruciating pain, unable to walk up or down stairs, unable to get into or out of a chair, unable to sleep flat in bed. I was on opioids and steroids. Because I was in so much pain, I was mostly sedentary during that time, losing muscle mass and gaining fat. Moreover, due to my cancer being hormone receptor-positive, I was put into medically-induced menopause. Forced menopause, along with the hormone therapy drugs I take, caused me to gain even more weight and made any weight loss attempts much more difficult.

Rationally, I can appreciate that the unwelcome changes to my body are a direct result of treatment for my disease. Nevertheless, even with stage IV cancer, I remain preoccupied with my body size and appearance. I am softer, rounder, fatter (and more exhausted) than I have ever been. My vertebral fracture caused height loss, and a visible (to me) deformity in my back. I have darker under eye circles, and my skin is much drier, leading to more fine lines. The pain in my back and joints is ever present.

I know that this is not true, but I think I look more than a decade older than I did prior to my diagnosis two years ago partly because I feel like a fat, hunchbacked old lady, rather than a 40-something mom of a tween. I’m trying to work on this.

I am trying to make healthier choices to impact my energy levels. I’ve started to eat a high fiber, mostly plant-based diet, and I also walk about three to five miles a day (crazy Houston weather permitting). Eating healthier and moving more helps lessen some of my medications’ side effects. My joints are less painful, and I tend to sleep better with more physical activity (although I still do take medications for both insomnia and joint pain). I feel more sluggish on days when I don’t exercise. My weight has gone down a bit, but I still weigh a good 40 pounds more than I’d like.

In photographs, I often do not recognize myself. I have been known to refuse to be photographed below the neck, which considering my diagnosis seems vain and selfish since now more than ever I want to capture memories of my life and adventures. I want my wife and son to be able to look back fondly at photos of us, of me, while I’m still doing well. Objectively, I know that I look okay, even relatively attractive most days. But even when I don’t look great, I know that my family doesn't care, as long as I’m here with them. I’ve also gotten to a point in my life where I honestly don’t care what strangers think about me.

My main struggle is a self-inflicted one. I have always been too harsh on myself. I have come to realize that I would rather be here and be present and do things that I enjoy than be preoccupied with my weight and appearance. I literally don’t have the time to waste. Instead of getting upset when my skinny jeans won’t button, I’ll put on larger pants and move on. I have more important things to worry about.

Living a full life

Since my diagnosis, I have taken this softer, rounder, more exhausted body on road and airplane trips to visit friends and family, on a cruise, to amusement parks (and all the rides), snorkeling, to the zoo, on walks for miles in unfamiliar cities, to concerts both seated and general admission, white water rafting, on hikes, to museums. I’ve gotten tattooed and have gotten fun hair colors.

So, maybe I am out here living my best life, albeit with stage IV cancer! I’m definitely here for a good time, and hopefully a long time. I will drink the wine, will eat the pasta, will exercise when I feel up to it, will enjoy my life with the time I have left.

I will try not to criticize my post-cancer body. I will try to be kind to myself. I will make an effort to be a whole person, in those photos, and with my body.