Melanoma Awareness Month – Natalie Wright Montanez

Guest blog by Natalie Wright Montanez, a cutaneous melanoma survivor and advocate who shares her journey after being diagnosed in 2020:

It’s May, and May is Skin Cancer Awareness Month. It’s also Mental Health Awareness Month. These observances go hand-in-hand for me, because I have an on-again, off-again relationship with melanoma, the deadliest form of skin cancer. It shows up in my body whenever it wants and plays games with my mind. Doctors speak to me in soothing tones that scare me, while non-medical people regularly assure me not to worry: “It’s just skin cancer.” Melanoma makes me feel stupid because I never know if I’m taking it too seriously or not seriously enough.

Since 2020, I’ve had melanoma removed seven times. Six of those times, the tumors were stage 0 (in situ), meaning they hadn’t penetrated beyond the upper layer of my skin. Melanoma at the earliest stages has a cure rate of 98%. Science is incredible! My doctor removes these kinds of tumors under local anesthetic and sends me home with stitches and some Tylenol 3.

Once melanoma begins to spread, it becomes a different beast. If it isn’t caught at the very early stages, melanoma will typically spread to the lymphatic system first, and from there it can move unbelievably fast. After the lymph nodes, it often goes after your lungs, liver, and brain. Turns out it’s just skin cancer, until it isn’t.

When I was first diagnosed with melanoma in 2020 at age 39, I asked my doctor how long I could wait to have surgery. I had three tumors that needed to be removed, meaning multiple trips to her office, and the Covid-19 pandemic had just begun. I was more terrified of going out in public than I was of the cancer. She told me that melanoma can begin traveling through your body in as little as six weeks. “I strongly encourage you to get this taken care of soon,” she said.

One of my seven instances of melanoma was more serious than the others. A dark splotch on my left ankle popped up out of nowhere and turned out to be somewhere within stage 1. Invasive. That means it had penetrated deeper into my skin and was big enough that my doctor worried it could be spreading.

She referred me to the Seattle Cancer Care Alliance, where the “real” cancer patients go. They gave me a welcome packet and assigned me a team (!!) that included an oncologist, a physical therapist, and a “care concierge.” My team checked in regularly leading up to my surgery and after. They were amazing and kind and smart, and I felt like a complete poser. Like I was wasting their time with my skin cancer. (“Don’t they just freeze that stuff off?” a neighbor had asked.)

So along with having the invasive tumor removed from my ankle (4.5 hours under general anesthesia at UW Hospital, two surgeons — oncology and plastics — and six weeks in a boot), I also had two lymph nodes removed for what’s called a sentinel lymph node biopsy. This is how they check to make sure the cancer hasn’t spread to the lymphatic system.

Luckily, my lymph nodes were clean. The surgery left me with mild lymphedema in my left leg, but I’ll take that over death. It means I need to wear compression socks, stay active, avoid alcohol, and put my feet up. Three out of four isn’t bad.

Everyone should get their skin checked at least once a year. A routine skin check takes about 15–20 minutes for most people, and if you have health insurance, it’s likely covered. Anyone with skin is at risk of developing skin cancer, regardless of race, ethnicity, or tendency to burn. When melanoma is diagnosed in people of color, it’s often at a higher stage, making it harder to treat.

Because of my history, I get my skin checked every three months, and the appointment takes about an hour — longer if there’s something to biopsy. The doctors look everywhere. Searching for skin abnormalities is also something that my gynecologist, ophthalmologist, and even my dentist have to do. My skin has been mole-mapped, which means hi-res photos of nearly every inch of my body have been taken (using less-than-flattering lighting). They’re saved on my computer, and they’re the least sexy nudes imaginable.

Whenever I get a skin check, my doctor and her med students compare each section of my body to photos taken earlier, making sure none of my more than 300 moles have changed. They use these cool dermascope things. They take more photos. They use purple markers to draw circles around spots that look suspect and will be sliced off in a biopsy. I’ve lost track of how many biopsies I’ve had. Sometimes, when a new provider asks me if a strange spot is an old biopsy scar, I feel like an idiot when I can’t remember.

Actually, melanoma makes me feel stupid most of the time. I wear thick, long sleeves and big, dorky hats. I slather on sunscreen when I’m just running errands. People tell me I’m pasty and I look like I’ve never seen the sun. (That’s actually the point, so thanks?) I wear compression socks with dumb patterns on them because compression socks are awful so why not get the hot pink ones with dogs in sunglasses. At a restaurant, when the host asks if we’d like to sit outside, I’m the killjoy who blurts out, “I need to sit in the shade.”

Medical providers ask if any of my moles have changed and then give me A Look when I can’t answer, as if I’m irresponsible. But I have so many moles (and I can only clearly see the ones on the front of my body) that I have no idea what’s changed and when. Sometimes I see one somewhere and think, Wow, you’re definitely new. I’ve never seen you before. Then I look at a photo from a few years ago and realize, Oh wait. There you are. I just never noticed you before. (Yes, I talk to my moles, which is idiotic, too. As is singing along to Sinatra’s ‘I’ve Got You Under My Skin’ when changing bandages after surgeries, but it makes me laugh.)

Well-meaning people often give me advice, as if I’m the idiot who’s never considered her life choices before. “Wow, you better stop tanning!” and “Lay off the beach, Natalie.” Do you think I did this to myself? I’ve never set foot in a tanning salon. I hate being in the sun. Summer was and is my least favorite season. But I grew up in Southern California in the 1980s, when all we had was SPF 8, and I was lucky if someone put it on me once a day. I started getting regular skin checks as soon as I had health insurance in my early 20s. This situation isn’t my fault. It isn’t anyone’s.

Or they’ll tell me, “Well at least it’s just skin cancer.” Or even better: “If you have to have cancer, that’s the one to get,” as a former boss told me in 2020, after my doctor called at work with the first of many rounds of bad news. Is it? I wondered. You make it sound like I’m hiring a roofer.

By the way, here’s a fun fact about melanoma (from now on, The Cancer to Get!^©). About one million people in the U.S. are currently living with it. One. Million. And in spite of that, the Melanoma Research Foundation says skin cancer is “the most underfunded of all cancers by federal and private agencies.” Skin cancer tried to come for Wolverine, for crying out loud. None of us is safe.

Since people aren’t funding research for skin cancer, they have extra time to stare at those of us living with it. Sometimes, the staring makes me feel like an idiot for trying to wear a sundress. Or when someone sees one of my scars for the first time and reacts. “What happened to you?” they tend to blurt. Oh that, I say. It’s just my shark bite.

I have a lot of scars. There’s no appendage that’s not scarred. There’s a long scar down my left bicep and another on my right shoulder. The scar on my left ankle is shaped like a diamond that’s nearly five inches across. (The plastic surgeon did what’s called a “local flap,” and it’s actually very cool.) There are two straight lines across my right thigh and another across the right side of my torso. There’s a scar between my breasts. There’s a big circle on the back of my left calf that was closed with something called a “purse” stitch. If you’ve ever seen a bucket bag, then you have an idea of what that scar looks like.

Shark bite is often my go-to because I honestly don’t know what else to say when asked. If I tell the truth, then reality immediately gets minimized. “Oh! Skin cancer! That’s nothing. I had a weird spot removed once, and I was fine.” But if I brush if off, I end up having to explain the scar anyway, because people — god love us — are very good at prying. We want to know what happened, but we’re not so great at listening. And when the story turns out to be just skin cancer, I usually find myself apologizing for details that I didn’t initiate sharing.

A voice in my head is constantly telling me that I don’t have cancer, which makes me feel batty. I’ve had cancer growing on my body at least seven times, but I don’t have cancer the way we think of when we say someone has cancer. (And I’m grateful for that!) I don’t even know if what I have is recurring cancer. I just have cancer that keeps showing up. Dermatologists and I will be playing whack-a-mole for the rest of my life, praying neither of us misses.

Nearly 8,000 Americans will die of melanoma in 2023, and yet I feel stupid whenever I realize that I’m scared or sad. Or when I look in the mirror and see all those scars and wonder why on earth I even bother making an effort? I feel hideous, and I’m apparently also vain, which makes me feel vapid. And when I try to talk to someone about melanoma and then realize someone in their life has had “real” cancer (and maybe didn’t survive it), I feel like scum. Sometimes, I even worry people think I’m pretending to have cancer, because what is more reprehensible than that? Like I’m making mountains out of moles.

I once went to a support group for melanoma survivors and felt like a moron who’d stumbled into the wrong group. They had all either survived stage 3 or 4 melanoma or were currently fighting it. I went because I thought, This disease is so hard to talk about with anyone, and these people, of all people, will understand that. These are my people. Except then I felt even worse when I heard their stories. There I was: healthy. Scarred and bandaged, but with no active cancer in my body (per my most recent three-month check; I think in three-month increments). And here they were: people who had truly endured some shit. Immunotherapy. Radiation. Brain surgery that left them impaired.

One woman in the group shared that she’d had melanoma removed from her leg when she was 18. She went on to live a normal, happy life for FIFTY years. Then bam! She became incredibly sick in her late 60s, and the tests found stage 4 metastatic melanoma in her lungs. Other group members had stories like that, but hers was the most extreme in terms of the number of years between the first diagnosis and when the shit really hit the fan.

When it was my turn to speak, I just apologized for being there. “I’m in the wrong place,” I said, “but thank you for letting me listen.” A kind woman smiled and said something about how there’s no judgment and no one needs to qualify to be in the group. So I told them my story, and a few people made soft gasps when I said “seven times,” and then it was just quiet. I broke down in front of other people about this for the first time in my life.

Melanoma is cancer, and because it’s cancer, you can have it once, and then it can come back to attack you decades later. And the more times you have melanoma, the more likely you are to have it again. These other people in the group talked about having melanoma removed once or twice before their real ordeals started. Am I a dead woman walking?

Well, of course. I’m human. That’s part of the deal!

Whenever I start to go down these woe-is-me pity paths, I remember that. I heard a dharma talk a few years ago by a speaker living with a terminal illness. She pushed back against the idea of “why me?!” that so many of us wrestle with when we get really bad news. “It’s not fair!” and “I don’t deserve this!”

Her argument was this: Who the hell are you to think you’re immune from bad news? To think that you, of all the humans on this planet, should be exempt from suffering? Of course it’s you. Why shouldn’t it be you?

Being alive means that, at some point, you won’t be. Life doesn’t make sense without understanding that death is priced in. Sure, the odds of me dying from melanoma are likely higher than they are for other folks. But I also once broke my foot while walking on the sidewalk in front of my apartment, so we can’t rule out a freak accident, either!

Melanoma is terrifying and isolating, and it messes with your head. It’s humbling. It’s cancer, and cancer does these things to you, no matter which organ it starts with. I have such a hard time saying this stuff in my real life that I wrote this insufferable essay to justify saying it all at least once. (Btw, thank you for getting this far.) By writing here, I hope a few of those other one million people who live with melanoma might hear themselves in this story and feel more comfortable sharing theirs.

Melanoma often makes me feel stupid, but it also makes me feel grateful. It reminds me to focus on what matters. I’ve had it seven times so far, but I’m still here.

Please wear sunscreen and a hat, and stay in the shade whenever you can. Please make sure the people in your lives do those things too, especially if they are too young to make those choices for themselves yet. And #getnaked— it might save your life. It keeps saving mine.

 

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