It started as early as my first surgery, which was three days after my surprise diagnosis. They shaved a small section of my head and when I woke up and was conscious, my sister told me the doctors had said “She’s lucky she was in L.A., anywhere else and they would have shaved her whole head!” After my first surgery for a brain tumor, I was lucky because they hadn’t shaved my whole head…

So now I want to talk about hair. But not in the typical cancer hair-loss sense. I want to talk about why we talk about hair, because it bothers me that it has become such a prominent part of the conversation about cancer.

The first question or comment I get after covering the basics- brain tumor, yes I will always have it, yes I know I’m so young- is a question or comment about my hair. This has been the case for almost three years now, and this inquiry comes so consistently and from so many sources, that even though I wasn’t initially concerned about my hair, the issue has now bored its way into my psyche and made a home there. After my surgeries, when talking through my course of treatment, my oncologists discussed hair loss at greater length than the actual mechanics of chemo and radiation. I was told that if I wanted to get a wig I should refer to it as a ‘cranial prosthesis’ because that would best facilitate a refund from the insurance company. Even before I lost any hair, people preemptively offered to shave their heads with me in solidarity, which in all honesty I found offensive. I don’t think it came from a place of conscious selfishness, but all I could find myself thinking in response to this was, “I’ll be damned if you’re going to use my cancer as an excuse to finally live out your rebellious punk fantasies.” Random people on social media with no knowledge of my scenario other than that I ‘had cancer’ sent me articles boasting some experimental new way to stop hair loss from treatment. To this day most people are simply baffled that I have any hair. Family and friends constantly comment on how I haven’t lost much of it. Which, really, how dare people tell me what my body has or hasn’t done from their external point of view? And when I inform them I’ve actually lost a lot, they uncomfortably and jokingly come back with “Oh, well you can afford it; you had so much to begin with!” Completely unsolicited, people tell me how beautiful I still am, even with hair loss. I have sat in counseling session after counseling session where women struggled trying to keep their hair, desperate to keep any amount of it they could, but discouraged by how expensive and tedious the various methods were.

I’ve personally spent more time and energy on my hair than I care to admit. And it continues to be at the forefront of my mind, though it’s been long since I was moved by any of the rhetoric surrounding it. I think it takes up so much of my mental space because I’m frustrated by the lack of any real insight in the never-ending articles, sites, comments and concerns addressing the issue. And in actuality, this focus is on the harsh and deadly mechanics of treatment on a person’s body. Chemotherapy drugs target cells that rapidly divide, namely and hopefully the abnormal cancerous ones. But hair structures are also composed of cells with a high turnover rate, which is why patients lose their hair. So this most fundamental core aspect of our body’s struggle for life and we devolve that into cosmetics. So really, what I wonder-- what if we just didn’t make hair into such a climactic thing when we talk about cancer?

The image that everyone has in their head when they hear the word ‘cancer’ is a figure that is skeletal and bald. That’s your Hollywood cancer patient, validated by cancer awareness and research media that we see on a daily basis. This is really the only image the public has of cancer unless someone has had a personal experience to show them otherwise. As cancer patients going through intense and often debilitating treatment, hair loss is one of the many potential side effects. And while many patients do experience it-- some don’t. It’s not an omnipresent element of the disease itself, and I dislike any discussion that boils something as big as having cancer down to an inaccurate universality. I understand that some may want to celebrate being bald or even just not having a full head of hair, but spotlighting something is not the same as normalizing it. So as hair continues to take up such a large part of the dialogue around cancer it creates a vicious cycle that is detrimental to us as patients. People are hyper-aware of our hair, or lack thereof, and it makes for an environment where we then become hyper-sensitive about it, and so on and so forth. We become preoccupied with an appearance issue rather than focusing on the health of our bodies.

I was not initially bothered by the possibility of hair loss. I personally felt if I lost hair, then I lost hair, simple as that. I did have that societal typecast image in my mind though, but not as something I feared or even expected. Just as the image I looked to for how I thought I should be as a cancer patient. And now here I am, about three years out from my diagnosis, two surgeries, five and a half weeks of combination radiation and chemo, followed by twelve more months of chemotherapy and I have lost a lot of my hair. Not all of it, and I can’t quantify how much, but suffice it to say it’s been a lot. Not only that, but the topography of my head has been altered. Tracing natural imperfections up to my crown, the smooth and rounded shape is interrupted by a deep crevice just off center, followed by the bulbous and unnatural permanent shunt that was placed between my skull and my scalp and runs the internal length of my body to my abdomen. The texture of my new hair is completely different too, and it doesn’t grow at the same rate it used to. It still comes out in tangled strands in the shower, and reacts differently than it did before. My whole head constantly hurts a deep sore hurt from trauma to the follicles and the constant cycle of falling out and growing back in, over and over. My hair has been changed; but it cannot be divorced from the rest of my cancer experience. So when that is what people chose to single out and acknowledge, I find it incredibly triggering.

Now granted this is a single perspective, and it’s important for me to acknowledge that I have privilege in this regard. I didn’t go bald; I wasn’t an obvious cancer patient. I fully admit I don’t know the whole story of what that’s like. So please know, I do not begrudge any patient for how they feel towards their own hair loss. I am absolutely not shaming fellow patients, especially women. I simply feel that all of the time and energy that goes into the topic of our hair could so better be used for other things and I ache for my fellow patients who are compelled to spend that precious time and energy on appeasing others’ discomfort with their bodies. If a patient does lose their hair as a result of treatment, then they can cross that bridge when they come to it, in whatever way is most helpful for them. But there is really no medical reason to be concerned with hair loss. Unlike secondary cancer or infertility due to treatment, hair loss is medically inconsequential. No bodily harm will be risked if the doctors don’t discuss it with their patients. No shows of support will feel less-than if hair isn’t addressed when you learn of a loved-one’s diagnosis. Not to mention the gross sexism and classism tied to prioritizing a cosmetic issue in the face of serious illness.

So I ask again, why are we talking about this? Maybe it’s because so many side effects and symptoms are internal whereas hair loss is external and therefore visible to others? Hair typically signifies health; it’s something people can grasp and based on their own perceptions, determine the severity and legitimacy of your cancer and therefore gauge how to react to you. It’s a body part they believe they can relate to and therefore make comments about. Or maybe it’s just a topic seemingly safe and innocuous enough to allow for conversation without going anywhere near the dangerous topic of mortality. Regardless, speaking from my own experience, I’ve been so reminded and hounded about my hair that it has felt like everyone was telling me I should be more concerned about that part of my cancer. It has reminded me of Sarah Silverman’s bit, “We need to stop telling girls they can be anything they want when they grow up. Not because they can’t, but because it would have never occurred to them that they couldn't.” Why are we talking about this-- I don’t have an answer.

Whatever the reason, I say again, there is too much time and energy spent on warning patients of their potential hair loss, and loved-ones focused on said hair loss, and so many products patients can use to hide it, and so many support sites saying that they don’t have to hide it, and I’m simply exhausted by it all. If we just stopped talking about the hair issue so preemptively and preeminently and in such a steeped way-- if cancer patients weren’t forced to be so constantly and consistently aware of it… then maybe going through this illness would carry one less burden.