Cancer Shaming

I recently read this article and it really hit a nerve. Being diagnosed with one of the top 'it's your fault' cancers, I have been labeled repeatedly as the cause of my own cancer. I can tell you the first time it happened. It was over seven years ago, but I remember it clearly. I walked into the nuclear medicine department of my local hospital and was asked to lay down on an uncomfortable sort-of padded table and wedge myself under a giant slab of plastic coated metal. Then a medical professional of some sort came in and made small talk as my shoulder was prepped to be injected with radioactive toxins.

Medical Professional: So you have melanoma?

Me: Yeah.

MP: Wow. You're so young... [This line also got old really fast]

Me: Yeah...

MP: So you tanned?

It was more of an assumption than a question. So, you tanned. And as the words reverberated in the silence of my shock, it began to feel more like an accusation than an assumption. Then she stuck me with needles and told me not to move for two hours, but not before I felt I had to tell her the whole awful story of my diagnosis. 

That day I left cramped, sore, and sure of two things: 1. If my cancer had spread, it would be under my arm, not in my neck, and 2. I would be judged because of the type of cancer I got. 

Cancer shaming isn't limited to melanoma. Lung cancer survivors are also judged, as are survivors of reproductive cancers, especially since the link between HPV and cervical cancer has been widely broadcast; did you get cancer because you were promiscuous? In a society focused on health and wellness, even cancers not traditionally linked to specific behaviors are attributed to the patient's lifestyle choices; consumption of processed foods, failure to exercise, being chronically stressed, all become fair game for others to question and judge the cancerous. 

Let me break down for you what happens when cancer shaming occurs. For the person with cancer, prying questions about choices and behavior only foster guilt and call into question the role the survivor may have played in their own illness. For the asker, there is more to gain. If the patient did engage in 'cancer causing' behavior, while the asker did not, it reassures the asker that they are immune to cancer (and confirms for the patient that their cancer is obviously their fault). If the patient did not engage in cancer causing behavior, these questions lead to frustration, anger, and shame, as well as feeling the need to explain the cancer. 

Maybe after reading this you're thinking to yourself that I must have caused my cancer to be writing about cancer shaming and how much I hate it. You're dying to ask, but now feel like you can't...But did you tan? Did you wear sunscreen?

I'll give you two answers. The first is my gut response to cancer shaming questions. Does it matter? Will you have less empathy if you know I chose a path that led to cancer? Should I accept my fate because I brought this on myself?

My second answer is this: No. I didn't tan, and yes, I wore sunscreen. I'm telling you this much because I want you to know that anyone can get melanoma, and you should go see a dermatologist, even if you take precautions. I'll fight back the urge to tell you the whole story of how someone who doesn't tan and wears sunscreen ends up with advanced melanoma. Because despite what cancer shaming has conditioned me to believe, I don't owe anyone an explanation of how or why I got cancer. 

Montana Bound!

I've admittedly slacked off in posting as often as I should, and I do apologize for that. However, my excuse is that it's summer and I've been enjoying every second of it, which includes doing things like riding my bike, running, going to the beach, and competing a few home improvement projects. The past week's agenda included a day at the beach, completing my first true 'brick' workout, painting both my kitchen and a beastly-large hallway that winds up a staircase, riding my bike to the gym (and working out before riding home), running a 5K, and mentally preparing to pack a suitcase for my upcoming trip to Montana. Oh, and I tutored students for about five hours, too.

Writing this makes me feel a lot less lazy. I felt like I didn't do a whole lot this week, but looking back, I guess I did accomplish a decent amount :), and now I can add writing a blog post to the list, too.

I have a lot to do before I go to Montana tomorrow morning, so I'm going to keep this (sort-of) short. Bright and early tomorrow, I'll be going to Glacier National Park to do some whitewater kayaking with First Descents. They're the awesome charity for which I ran my most recent half marathon.

I'm super excited for the whole experience. I've been on two other FD trips, one to Colorado, the other to Washington state. I love the energy of these trips; everyone is so positive, and I can't get enough of the laid back, outdoorsy west-coast attitude of the kayak guides. I also get to meet some new YA cancer survivors, which is equally exciting. There's an unspoken bond that exists between YA survivors. We have common experiences that link us in a way that can't be explained. It's an instant connection that makes it possible to become friends in a day and family within a week. This is one of the things I love about trips like this.

Despite the excitement, I can't help but also reflect on my first trip to Montana. It was a godsend and a nightmare, all rolled into one. It was the dead of winter in 2007, and the first time I met anyone who had cancer and wasn't at least two decades older than me. I've shared selected parts of my memoir on here before, about my hair and also the last piece I wrote. I've written a bit more this summer, trying to actually finish the whole story. Here's the one about my first trip to Montana:

I learned about the existence of a place called Camp Mak-A-Dream from a woman who began attending the cancer support group I'd started to frequent. Her daughter, Jill, was diagnosed at twenty-three, and while her daughter had beaten stage III colon cancer and moved on, she was still dealing with it herself two years later. As a mother to a child about my age, she took comfort in talking to me and seemed to be able to get some perspective on her daughter’s point of view through talking to me, and it was she who told me about the camp in Montana that her daughter had attended.

While Jill wouldn’t talk about the cancer, her mother said she raved about the time she had out in Montana. I waited for months to go to Camp Mak-A-Dream. I knew it would change everything because I would get to meet other young adults who understood what I was going through; I would not be alone anymore. Through all the headaches, my eyes were on the prize of getting on a plane and flying across the country to Montana, to a camp set at the foot of a mountain, where other people far too young to have cancer would come together for a week of fun; skiing, hiking, crafts, and workshops. In all my dreams of how that week might be, I never imagined I would have the experience that I did in Montana.

When I arrived at camp after two long flights and an hour drive from Missoula to Gold Creek, I met my cabin mates, and I felt a sense of panic walking into a central room where there were couches and comfortable chairs, a large mantle and fireplace. It was rustic and inviting, but I wanted to turn around and go back to New Jersey the second I walked in. Other young women sat on the floor, a couch, and in chairs. A few of them wore winter hats, and it was clear that there was no hair beneath them. Why did I want to meet sick people? This was a terrible idea. I want to go back home where everyone around me is healthy and normal. They look like cancer patients.

While I had these thoughts I came in and introduced myself to Courtney, Valerie, Jen, Jackie, Sandra, Jessica, Jane, Bridge, Holly, Sara, Natasha, Becca, and Deanna. I sat down and as I listened to them talk, I realized that even though I was put off by their sickness, I was just as sick as they were. During the next few hours we became friends; it was a sisterhood of cancer. We shared stories, talked about school, boyfriends, health insurance. Within twenty-four hours we were like old friends.

On the third day of camp, I awoke and put on my glasses as I’d done for the majority of my life. But today I couldn’t see clearly. I checked my eyes to see if I had slept in my contacts, and that was causing the problem, but I found my contacts in their case in the cabin bathroom.

At breakfast I told the camp doctor about my vision. He was a Saint Jude pediatric oncologist who had a quirky personality and an overweight beagle by his side constantly. He promised to call Quinny(my doctor) about my sight, and told me to take it easy. As the day went on, my vision deteriorated further; by lunch I was wearing both my contacts and glasses, and still wasn’t able to see clearly.

The doctor checked in, coming and sitting next to me at lunch.

“How are your eyes?”

“I think it’s getting worse. Did you call Doctor Quinn?”

He nodded, “Yes. He thinks, and I agree, that you are having an aura without the migraine.”

I voiced my doubts then, the vision impairment I experienced prior to a migraine were never like this; they were usually similar to what is seen after a camera flash goes off, then the dark spot would grow until I couldn’t see much of anything. But the doctor assured me I would be fine. He suggested I rest after lunch, and I decided I would do this, hoping I would wake up able to see again.

I woke before dinner, the sun had already begun to set and the other girls were in the cabin changing for dinner. Before I opened my eyes, I said a quick prayer that I would be able to see, but when I tried to open them, it seemed my lids were stuck together. I brought my hands to my eyes, planning to rub away the crustiness that was holding them shut. But what my hands found was frightening, I no longer had eyes that rested in sockets; my eyes or lids, or both, were so swollen I had no indentation below my brows; my eyes simply protruded from there. I gasped and began to cry, although no tears came from my monstrous eyes. I was able to open them, but I could see even less than before. I saw blobs of color, and that was all.

“Juli, are you awake?”

The voice came from across the room. It seemed most of the girls had already left for dinner.

I nodded, not sure who was talking to me.

A red and white blob moved toward me and sat down on my bunk.

“Are you going to come to dinner?”

I shrugged, and then started shaking my head, “I can’t see anything!”

“Nothing?” came a surprised response.

I still didn’t know who I was talking to; I couldn’t see her face. Crying without tears I explained, “All I can see are colors. I don’t even know who you are!”

The blob gave me a hug and said, “It’s Jessica, your bunk mate.”

Jessica was a pediatric cancer survivor and was also from New Jersey. She had claimed the bunk above mine.

“Lets go to dinner, I’ll walk you there.”

Jess helped my find my coat and hat, and she guided me to the main lodge, then up the stairs to just outside the dining area.

“Wait here, Jules,” Jessica instructed, then left me in the shadows of the hallway.

She was gone for what seemed like too long, so I came in and found an empty chair at one of the round tables. I took off my coat and feeling the girls looking at me said, “I can’t see anything.”

Val came up behind me, and I only knew it was her because of the southern lilt of her voice, “Juli, do you want me to get you some dinner?”

“Sure. I’m not really hungry though. What is it tonight?”

Val explained the menu and brought me my requests on a small plate.

As we finished dinner, the doctor came over and asked how I was feeling. The decision was made that I would go to Missoula to the nearest emergency room. Apparently having hugely swollen eyes and suddenly going blind was grounds for making the long drive to Missoula late at night.

I spent the next few days traveling back and forth to Missoula, where I saw an ER doctor, then an ophthalmologist, who couldn’t figure out what was wrong with me. Convinced this was somehow related to the preventative migraine medication I was taking, I stopped taking the drug on the second day I was blind. I continued to tell the doctor I thought that the blindness was related to the migraine medication, but he never commented on that. I also called my mother on that second day, deciding I was calm enough now that I could tell her that her daughter who was on the other side of the country was blind. I also asked her to Google ‘blindness and Topamax’, which she did. Glaucoma came up as a rare but listed side effect of the drug.

Once I stopped taking the migraine medication, my vision gradually returned and my eyes deflated over the next few days. By the time I went home, I could see again. When I had regained my sight, the girls told me they didn’t want to scare me, but I had looked awful. They described my eyes as golf ball-like and looking too dry, while my irises were watery and slimy. We joked about it, and they nicknamed me Glaucoma Girl. I thank God that I didn’t go blind while I was at home; I would have been terrified. It was different in Montana, we had all been through difficult times, and we laughed as we went through them, so it was only natural that we laughed at my blindness, and never let on that it was frightening until it was over.

Write it Out

It's been almost two years since I finished writing the stories of my cancer experience. I wrote them all down in an effort to make sense of all the physical and emotional pain I experienced from the time I was diagnosed until I finished treatment, or at least I thought that was what I was doing.

When I originally started writing, I began with about ten blank Word documents, each titled some thing like, "The One When..." or "The One Where..." they were modeled after the ten seasons of Friends episodes I watched when I was first diagnosed and anything but sitcoms made me cry.

The documents were meant to be individual narratives that told the stories of the pivotal moments in my experience with cancer. But as I wrote one, I would think of two more experiences I needed to write about, and so I would create more blank documents, all with titles adhering to the same format. The more I wrote, the more stories I found I wanted- and needed- to tell. Some of the stories were emotional, others were funny, and there were others that I left blank for a long time because I knew that writing them would force me to relive experiences so painful I didn't know if I could put to words what had actually happened.

But eventually I did. In August, 2009, I wrote a final document, titled "The Last One." I then pieced the documents in order, and wrote a preface explaining them. I have only printed any of it once. I gave it to a friend to read, and have since emailed it to one other person. I recently began reading it again, and though I haven't yet reached the halfway point, I'm thinking when I get to the end, I'm going to feel like I have a lot more story to tell. I only told stories up to the point I finished treatment, and as it turns out, that wasn't really the end of the fight.

At the time, I felt I couldn't go too much further, because it was all too close to write about; it was my present life, not a memory. But now things are different, and I think maybe it's time to tell the rest of the story, the part that comes after treatment ends, but before I figured out who I really was after cancer.

I thought since I've been discussing it, I at least owe you a piece of the story. So here's "The Last One" which it turns out, isn't actually the last one, after all. It may still come at the end when I finish telling the stories that I haven't written yet, but it's a much shakier version of the person I have become, there is an uncertainty in it that I don't feel anymore, so I think I'll have to revise it, but a lot of it still rings true.

The Last One

It’s been three years now since I went to see Dr. Cassetty for the first time. Just yesterday I was driving through town and while at a stoplight, I happened to glance in my rear-view mirror where the people in the car behind me were waving furiously. They continued to do this while I tried to figure out just who was in that car. When I finally turned around to get a better look, I saw that it was Dr. Cassetty and his wife. I waved back and then the light turned green.

I have met many wonderful people who I wouldn’t have known if I hadn’t gotten sick. I am thankful everyday that I went to see him when I did. I am well aware that if I hadn’t, my story would have looked very different; I might not be sitting here writing this. Another doctor might have brushed me off at my expense; after all, it happened once to me.

The scars on my body have begun to fade, slowly but surely. And the anger I once felt toward the boy who broke my heart, the friends who abandoned me, and for the invincibility I was robbed of, have become blurred around the edges. Yet it still only takes a blink of an eye for those things to come back into clear focus; an irregular CT scan that threatens to destroy everything I have worked so hard to earn back, running into that boy’s father, or a party where one of those friends shows up- all these things send me back to that place where the future was uncertain.

I am proud of the person I have become, and while I never thought I would believe it, life might actually be better after cancer than it was before. While my value of life is greater, I do feel that it is at times a curse. For every thunderstorm I am grateful to be a witness to-they make me feel alive- there is a girls’ night out at work that I feel guilty about turning down because I don’t feel completely at ease with these young women, because I have not shared my story with them.

While I have to live with these frustrations, I am more than happy to do so. I view life differently and have embraced my new found love of exercise and, dare I say, sports. I savor the moments I can play tennis, ski, take pilates, step classes, and dance classes, I run races, swim laps, and lift weights, and of course I fly across the country to get back in that kayak each summer. These things have become my therapy, for both my broken body and as a means of fostering a winning spirit. I have come to view life as a competition. I don’t compete against others, but with myself; how much weight can I lift? How far can I run? How much can I live? When I run further, when I lift more, when I push myself further than I thought I could the day before, I build my confidence in the fact that I can win the medical battles as well.

I suppose this is where I should share the moral of my story. It doesn’t end with a ‘happily ever after’ and I suppose that’s a good thing because it means my story, my life, is still a work in progress. Thankfully, it isn’t over yet.

I don’t have any grand epiphany to share now that I’ve written this whole thing, but if I were to tell you what I have learned from all the things that happened, it is this: You can’t win if you don’t fight. Life is an uphill battle whether you have cancer or not. Things will always happen. Bad things will happen, no matter how good you are. But success is not about dodging the bad things. Success is taking the worst and turning it into something better.

Bad things will happen, and that sucks. But you have to keep going, because that is what you are supposed to do when life goes terribly wrong; pick up the pieces of your broken self and keep moving, because as long as you can hold yourself together and push yourself onward, you’re bound to get to a better place. Whether it’s health or heaven, eventually things will get better, and I am living, breathing proof of that.

Skin Cancer Awareness Month

May is skin cancer awareness month. I stumbled upon this and found it funny(1:43), honest (1:24), and moving(2:39, 2:53). If you do just one thing this month to honor someone with melanoma, it should be watching this video.