A few years ago, I attended a summer barbeque with a friend- for the sake of the story, we’ll call her April. It was a nice afternoon, and I met several of her friends that I’d never met before. After we left, I mentioned to April how kind they were. When I mentioned one person in particular, April said, “oh, yes, her. I wish you had met her a few years ago. Cancer stole her beauty.”
I wish I could tell you that this is the point in the story where I told April that was an incredibly cruel thing to say. I wish I could tell you that I stood up for this cancer survivor, this kind woman who chatted with me as we ate pasta salad and shared details about our lives. But I didn’t. I remember that the comment struck me as unfair, but embarrassingly, I didn’t say anything.
It’s been several years since. April and I are no longer friends, and other details of our friendship are small and widely inconsequential. Those words though – cancer stole her beauty – have continued to ring in my ears, especially in the time since my diagnosis.
When I look in the mirror, I sometimes wonder if someone would say the same about me. Since starting treatment, I’ve noticed I look tired often. I have some new lines around my mouth and eyes when I make certain expressions. I have marks that look like bruises or healed wounds around my feet; my joints are darker and sometimes look bruised or discolored as well. I also have more frequent breakouts, and for a kid who had cystic acne and was on two rounds of Accutane before the age of 16, it plays deeply into my adolescent insecurities. I put on weight from two weeks of Gleevac in December, and it hasn’t gone anywhere as I’ve regained my appetite and I’ve rested more than ever before. I have a noticeable two-inch scar from a deeply misguided surgery and a sizeable growth which raises my chest and extends under my right arm. Maybe it’s because I failed to stand up for the woman with whom I’d eventually share a deeply painful commonality. Maybe it’s because I turned 30 this year. Maybe it’s because these chemicals are truly changing the way my body looks and behaves. But I see someone different in the mirror than I did a year and a half ago. The changes are enough to send me searching for the ways in which I am still me: some days they’re harder to find than the things that have changed.
And underneath it all, a deeper, more complex issue: this cancer started with me. It’s my own cells, my own body, rioting against me. I often wonder if it would be easier to accept a pathogen, to blame an infection, lifestyle choices, even a genetic defect. But this tumor started with nothing else other than me, and ultimately I’m waging a campaign against my own, faulty body.
I’m not writing this to fish for compliments or ask for pity. It’s honestly bigger and more important than all that. Body image, beauty, mortality: these are some complex and entangled issues. I don’t have them figured out and I don’t feel this is the place to try to write a dissertation on them. But I don’t need to tell most of you that to grow up female in America means you absorb countless confusing and damaging messages about beauty and body image. A life-changing diagnosis didn’t do that any favors. Like many other American women, I’m working on sorting and reframe some of those ideas.
Changing the Conversation
Here’s where my head’s at. We need to change the way we talk about cancer patients, beauty, and their bodies: not just for current patients, but for the sake of those who will someday be diagnosed. When that post-BBQ conversation took place, I could have never anticipated that I’d become a card-carrying member of the Cancer Club just a few short years later. I sometimes wonder if I’d interpret many of my physical changes in my own body as dramatically if I had not internalized hurtful comment.
I have received countless body-related comments since beginning treatment a year and a half ago, and some of them were unintentionally… well, unkind. When I was on Nexavar last year and constantly nauseous, someone commented, “well, at least you’ll lose a little weight!” As if losing weight is always the ultimate goal for women, or commenting on people’s bodies with unsolicited advice is acceptable. A few months later, I wondered bitterly if this person would say the same thing during an emergency room visit when I was unable to keep down liquids. “Hey,” I would ask her, “am I doing this right?” Food and nutrition during treatment can also be complicated subjects, because food is deeply personal and cancer is deeply painful. When I first announced my diagnosis, someone commented “I’m so sorry. You need to go 100% vegan immediately.” To which I say: let the person on chemo eat what they darn well please. I’ve been a plant-based vegetarian for over 10 years because that works for me. I also ate a Chipwich a day for about a week straight in July, and I have zero regrets, because that worked for me, too.
There’s another kind of comment that is a bit harder to unpack because it’s well-intentioned, it’s genuinely a compliment, and I’ve said it myself countless times: “you look great!” I appreciate this compliment. I do. The tricky thing is this: it doesn’t always leave room for is the real and present suffering that’s going on just beneath the surface.
There’s this image we have in our minds when we think of cancer patients: bald, smiling, usually thin. I do not fit that mold. I have, thankfully, kept my hair. I have not lost weight, though I have a reduced appetite and I try to go to the gym to make up for my 23 hours a day of restfulness. Truthfully, I’m really thankful I can skate through most moments in public without looks of pity or confusion. But it doesn’t come without its complications. A cancer patient doesn’t have to “look” any certain way to be a cancer patient. Sure, there are some commonalities – I have yet to see someone my own age on the infusion floor – but with mixed responses to drugs and innovations like Cold Caps, some cancer patients are able to maintain a level of appearance normalcy on a more routine basis.
We know that with everything from mental health to social media, appearances can be deceiving. Mine is no exception. Many of the side effects I’m currently facing can’t be seen or easily measured by others. My fatigue, the way it hurts to swallow, my ocular migraines and occasional vision issues, the pain in my shoulder: you can’t see this stuff. Sometimes it takes all of my energy to shower, and my outside appearance does not match my inner reality at all. So sometimes when I’m told “you look great,” I am just tired, and I want to respond that I would trade feeling normal over looking normal any day of the week.
Is this making sense? It’s a nuanced thing. I’m trying hard to explain the complexities of this without policing how people speak to me.
So here’s where I stand: Does receiving that compliment bother me? Personally, no. if I look stunning, and you want to say so, hey sure! Tell me! It might brighten my day. But just know it’s complicated, and every patient feels differently about this. The bottom line is that patients usually just want to have their crappy situation acknowledged, and that goes whether they are wearing jeans and just had an expensive blowout or are wearing sweatpants and a wig. You can tell me how you think I look- but be sure to ask me how I feel.
There is one exception to this rule. Please do not, under any circumstances, tell me that my tumor looks bigger or smaller. There are a number of things that can contribute to my tumor appearing a certain way and 0.0% of them are helpful to my psyche. In the past, comments about “it looks bigger!” or “hey! I think it’s smaller!” have sent me into either 1. an anxiety-filled panic or 2. a joyful optimism which has later ended in a crushing reality. So I learned relatively early on to let my radiologist, oncologist, and the UPenn tumor board measure my tumor – no one else.
A few months ago, I started listening to a podcast called This Podcast Will Kill You, which is hosted by two disease ecologists who discuss infectious disease and related topics. While it sounds grim, it’s actually helped me appreciate the way my body is working- which is great since I often think about (ahem, write this whole blog about) things it is doing wrong. Listening to this podcast I’m reminded that the list of things I do not have is staggeringly long! Malaria, encephalitis lethargica, hookworm, zika, measles, scurvy, hanta virus: my body is doing a pretty good job at not contracting things.
So when I get stuck on how this tumor has turned my life upside down, I remember to thank my parents for getting me vaccinated and my immune system for doing its darndest to keep me healthy. When I feel sorry for myself for getting wrinkles and feeling really old some days, I try to remember that growing older is a privilege. It’s a fate reserved for very few, and I hope I’m one of them.
Should that be the case, when my desmoid tumor and I turn 100 years old, you can bet your bottom dollar we’ll be riotously celebrating and eating our smash cake while wearing a crown. For me, there’s just no other way.