Cheese, BRCA 1 & 2, and #healthiswealth.

If I had a dollar for every time someone said to me “oh, so you’re doing the Angelina Jolie thing?”, I would have ten dollars. Maybe. And sure, in the sense that we both had bilateral mastectomies, they would be right. But there is quite a difference between Tomb Raider and I- she carries a BRCA 1 mutation and I don’t. Because she has a gene mutation, she was told that she had about an 87% chance of developing breast cancer. Mrs. Smith opted to pursue something call a prophylactic mastectomy (sometimes referred to as a preventative mastectomy), which seems to have been a wonderful option. She also opted for reconstruction, but I don’t have time to blather about that.

When I was diagnosed, a myriad of appointments were scheduled for me, and speaking to a genetic counselor was one of the first things I did. After watching my mom survive breast cancer, and then watching my grandmother do it eleven years later, I figured I should probably get some testing done. When I brought it up to my GP, she stated that I could do it but that I “was young and it was expensive”. Both are true, of course. My mother had just done her own testing, only for BRCA 1 & 2, which both came back clean (sans mutation), and my grandmother was old enough that testing wasn’t really seen as a helpful option.

So my genetic counselor and I mapped out my family (to the best of our ability because I don’t know shit about my bio-dad’s family) and opted to test the eight major genes that are considered high risk for cancer development. I figured that shit would come back with mutations across the board because…duh…it’s me. The test results took forever to be analyzed and it took me even longer to get in for the results, so in that time I had already had my surgery, had my drains removed (for the first time), etc. Justin and I both went into the appointment with trepidation, both of us assuming that things were going to be terrible- we wouldn’t be able to have children because I would just pass on a bunch of shitty shit to them…

Lo, and behold!

Not a single mutation. Nothing that explained why my body wanted to murder me slowly. The mix of disbelief and surprise was fleeting when reminded of the actual statistics of breast cancer. So I am not genetically mutated, but I still have cancer. And my mom isn’t genetically mutated, but she still had cancer. Granted, these tests aren’t 100% guaranteed, but come on, science and shit- they’re right. We must just be those fluke humans that develop cancer due to stress. I think that’s why it’s important to tell my story. So many people (read: women) have said to me “but you’re so young and healthy!”. First off- thank you. I am young and I am healthy. And then they follow that up with “I should get checked out”, to which I reply emphatically “YES, YOU SHOULD!”.

Here’s the thing: I AM young and I AM healthy. Sure, I smoked for five years. Yes, I ate meat. Yes, I did drugs. Yes, I engaged in risky behaviors because that’s just the natural course of life for a lot of young women in America. But I am a vegetarian, I engage in regular physical activity, and I live my life as exuberantly and as safely as I can. That “but you’re so healthy” is a real double-edged sword for me. I often feel like women are subconsciously judged for their life choices when they’re diagnosed. I certainly have felt that. But I also get the sense of disbelief that this could happen to a young woman. So really, dial it back, world. For those of us who don’t have a gene mutation, there is no cause and there is no cure.

Sure, sure. I could go vegan. I could go sugar-free. I could do a lot of things that I’m not doing to help/prevent/kill my joy. The beloved and I have talked about going sugar-free, but it sounds like a lot of work and we’re already incredibly stressed and anxious as it is. My mother reminds me about giving up dairy products because of my diagnosis. There is estrogen in cheese, she says. I will lower my risk of recurrence, she says. But you will pry this Brie from my cold, dead hands!

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This brings me to the #healthiswealth portion of my rant. Guess what? No, it fucking isn’t. It doesn’t matter how many kale and avocado shakes you make, your chances of getting cancer are still the same. You can buy one of those horrid Juicero things and squeeze your sustenance out of a plastic garbage bag for $400 a day and still get cancer. Bad things happen to good people, good things happen to bad people, diseases happen to young people, and evil people live forever. My point is enjoy life responsibly, be aware of your body, and do your research.

Women don’t do anything to deserve breast cancer, but it happens.

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Update time!

My drains were removed on Monday due to them trying to physically escape from my chest cavity. Who knew that my body wouldn’t love foreign objects sewn into it?! This means that I am now cleared for all of the prerequisites for chemotherapy, and my port placement surgery is scheduled for this coming week. Chemo commences on June 1st and I will have more updates on that treatment soon. It’s a bit to digest at the moment, but isn’t all of life?

If you can’t love yourself, how in the hell can you love somebody else?

So I went to Burning Man.

I did That Thing in the Desert.

I did it, I adventured, and now I’m home. But what does that mean?

I don’t know, friends. I had this entire post penned and ready to publish, but I instead kept hemming and hawing over it until I hated it. The whole thing was deleted. It’s gone in part because I loathed the way I couldn’t English up a good description of what I had experienced, but also partly because I don’t want to publicly share what I went through in Black Rock City. It may sound silly, but they are memories that I want only for myself and the people I shared them with. These people who accepted me for me, who built me up, and showed me that I am worth loving- I selfishly want to keep that inside of me.

Except it’s not selfish at all.

My last post (I think) mentioned the temple at Burning Man and how I had (maybe) set it as my intention for going out there. The temple itself is an incredible structure, made for the most delightful burn, and is covered in residents’ personal messages of grief, loss, and pain. I wanted to go there and take all of my anger, resentment, and hurt (plus a wedding dress) to burn into oblivion. It was such a small idea at the time but, by the Friday that I actually got out there, it meant so much more.

Avoiding the temple was easy for the majority of the week. I really didn’t want to go, even though it was my one goal. I think I was mostly scared of the emotions I might be overcome by. It’s enough to have your own shit to plod through, but thousands of other people bearing their heart and soul there? Ooof. That fucking temple could move Ted Bundy to tears, I swear. It wasn’t until I spoke to a camp-mate about watching the sun rise that I finally decided to bite the bullet. This human was incredible- a long-time Burner, a Green Dot Ranger, and all-around genuine person- he made me feel like I had enough strength to follow through with my original intention.

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Falling asleep to the EDM jams of our neighboring camp, Ashram Galactica, I dreamed my last dream about the person I intended to burn from my life experience. At 5 AM I woke up, threw on my wedding dress, some leggings, and the only sweater I packed (silly, silly mistake), and rode out with my grey wizard friend to the temple. I let the structure take me to a spot where I felt comfortable sobbing my little face off. Sitting down, I realized how overwhelmed I was by the intense grief and sadness that openly presented itself on the wooden walls. But the longer I sat, the more I took in and realized that we’re all one when we’re experiencing the lowest lows of our life. We can all understand what loss is- and in that loss, there is community, acceptance, and out-pouring love.

One thing I noticed as I sat there, shivering and debating taking that stupid dress off, was the number of monuments to David Bowie. I mourned the loss of the human who made it okay for me to embrace my weirdness just as much as the next person, but it wasn’t until the temple that I realized what that impact meant. Against a beam was propped a cardboard sign with a photo of Bowie and his iconic quote scrawled in black ink:

I don’t know where I’m going from here, but I promise it won’t be boring.

At that moment…at that sunrise…I had no idea where I was going. What I did know was that once I left behind all my negative feelings, once I let go of hating myself, when I truly just accepted myself for who I am…it didn’t matter where I was going because it was going to be fucking rad. I tied my wedding dress around that column and left, albeit freezing, but with a new head on my shoulders.

Later that day, while this was processing in my mind, I met a woman who had worked tirelessly on the temple build. She had come to our camp to receive some healing and had ended up waiting for a few hours to be seen. I originally sat down to apologize to her for the wait, but we ended up talking and got into a discussion about what our favorite parts of the Burn had been so far. I explained my little temple intention and the story behind it and she met me with an incredible bit of humanity and realness. Paraphrasing her words won’t mean to you, my dear reader, what it meant to me, but she told me that she had built the steeple of the temple. In it, she had placed a home-made banner from her own wedding (which had ended like mine), but that she was the only one who knew it was there. She explained that, while she was building, she knew that she was doing the work for someone. She didn’t know who. She didn’t know why. But she knew that the work she was doing was for someone who needed it. And at that moment, this woman told me that she built that temple for me– I was the person for whom she had intentionally worked hard for, and that I was worth it.

I cannot with the sobs. It was hard to work that day. My little, ice-cold heart had just been shattered into a thousand pieces and crocheted back together with random, yet intentional acceptance. This is why I am grateful for this experience. For every person who told me I was worthy of love. For every person who genuinely affirmed that I was intelligent, pretty, and sarcastic as fuck but still a good person. For every human who gave me a chance, and who let me be the weird me I am. Especially for the person who was willing to call me on my self-deprecating bullshit. Thank you.

Temple burn was a mess for me. I was incredibly emotional, but not in the way I though I would be. I was sad, but I was also elated. Knowing that you’re truly whole no matter what someone else has instilled in you for years is cause for laughter and celebration. I didn’t laugh though, I just leaked out of my face. Seeing that fire take over 70k+ people’s anguish was truly one of the most surreal experiences for me. I was happy and I was thankful.

While we’re on the idea of thankfulness, I want to mention how incredibly thankful I am for the HeebeeGeebees and the people I met through them. Never would I have imagined that there would be a group of individuals who would magically appear in the desert and challenge me to be a better version of myself. You made me want to learn, grow, love (myself), and appreciate others. I truly love you all for what you gave of yourselves during Burning Man and I hope I get to be a part of that for years to come.

For years I’ve watched RuPaul’s Drag Race and attempted to internalize the closing statement. I’ve always failed in that regard- I’m not worthy of love because look at me. But Burning Man gave me the chance to take that phrase and actually apply if to my life. I get it now, friends. If I can’t love myself, how can I love somebody else?

I can’t.

So for now, I just love me.

But I also love the fuck out of you all.

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And now for something completely different, kind of.

I think I might have mentioned that I’ve only ever been truly in love with two people. Maybe. I don’t know. It doesn’t really matter. I only want to harp on one for a quick second here, before I explain my upcoming prolonged absence. It all ties together, don’t worry.

This last human (let’s call him Daniel Plainview) and I have a bit of a history. We met long before the ex-husband and I met each other, and had a bit of a fairy tale romance. Shortly after I split with the ex, Danny P. and I reconnected. It didn’t take long for us to become very close. It confirmed that tiny gut feeling that I had all along- I loved this guy.

Long story short, Daniel and I parted ways in a rather volatile (so many feels!) way, but attempted to stay friends because I’m a masochist. Recently, he threw some salt into a very open wound, and we had to have a long conversation about things. In this conversation, he mansplained to me how I should just “move on without him” and that was that.

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It’s just that easy, friends! Just move on! Just forget everything! SO EASY EVERYONE’S DOIN’ IT!

Anyway, really the point of this post is to backhandedly thank him for saying that. I was recently given the opportunity to go to Burning Man, an incredible experiment in community, art, and music. Trust me, this is not something I would have ever chosen to do by myself, but my friends convinced me that it was what I needed right now. Two weeks disconnected from reality, spent with people who are accepting, etc. Sounds pretty good, right?

At first, I was all “this is just a bunch of hippies in the desert burning stuff and wearing costumes and glitter and it’s hot”, but after this conversation I’d just had, I started to come around. I started actually researching the event and came across their ten principles:

Radical Inclusion, Gifting, Decommodification, Radical Self-Reliance, Radical Self-Expression, Communal Effort, Civic Responsibility, Participation, Immediacy.

So, just looking at those, I can count four principles that I need to seriously work on in my life. I started looking at the trip as a way to turn off and reset my mind. A way to refocus my energy on not being so caught up in what other people want and need from me, but what I need and want for myself. And as my fellow cohort, M, says: MANIFEST!

I’m a total convert. I’m going to give myself over to experiencing the experience, I’m going to talk to anyone and everyone, I’m going to do things that make me uncomfortable in real life, and I’m going to let all this bullshit go in the Temple and rejoice when they burn the fucker down. It’s going to be seven days of magical catharsis. Bring it on, BRC.

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We’re leaving tomorrow morning. My friends rented an RV, and we will be taking our time getting out to Nevada. I’ve picked out some horrible roadside attractions for us to see, and I guess we might see that dead guy mountain or something. I’m looking forward to this. I’ll try to post from the road if I can, but otherwise, this is me signing off for the next two weeks. Wish me luck- this place is hot as balls.

And to Mr. Plainfield, a tip of my hat: