What they don’t tell you about having cancer.

Regardless of what disease you’ve just been diagnosed with, you’ve probably been given a metric fuckton of information about it. You’ve probably been scheduled to see multiple providers without regard to your actual time constraints. You’ve probably been told a whole host of things about stuff n’ things (facts, statistics, data, opinions, culturally ingrained bullshit opinions), and you are likely now in information/sensory overload with the immediate threat of stroking out looming over you. The point is that people throw information at you like a wasted frat boy throws darts at a wall.

My preferred method for dealing with provider appointments is to show up, look attentive and, at the first mention of something depressing, stop listening. Thank the gods for people like Justin and my mother who have sat through those appointments with me and listened to the information when I could not. If it weren’t for them, I wouldn’t be an active participant in my own treatment. Listen, when you start talking about freezing eggs and the millions of dollars it costs, expect to get traded in for the finer parts of my brain, such as Do You Think I Made the Right Decision at Breakfast? and Imagine What Would Have Happened If I had Done XYZ Seven Years Ago.

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But between shoving pink accouterments in your face and telling you that you should probably consider letting a plastic surgeon make bank off your acute despair, people forget to tell you important things, like how your life might change, or how you might want to consider mental health support immediately. Granted, I can only speak to this from the lens of breast cancer, but I have an inkling that it’s a feeling shared by many people who find their lives upturned overnight by the phrase “I’m sorry, but it’s….”.

So here’s a very incomplete and rambling list of things I’ve learned about living with a disease (that no one else mentioned).

  1. You may think you are strong and can see things through to the end without the thin veneer of bravery shattering into a thousand different pieces, but you are probably wrong. And that is okay.
  2. Your friends are going to turn it the fuck out. Their awesomeness has always been known, but it will be amplified by the threat of non-existence, and you will want to hug them that much harder when you see them. Don’t break their neck.
  3. Not all of your friends will want to stay your friends. This isn’t exactly specific to a post-whatever diagnosis, but if it happens while you’re in treatment, it’s going to sting like nothing you could imagine. George RR Martin couldn’t craft a better betrayal.
  4. You’re going to contemplate your mortality in ways you didn’t think possible. What would life be without the tangy bite of a good Gorgonzola?
  5. Decisions you were convinced were the right ones to make will vacillate between “greatest idea ever I love it so me” to “jesus christ what have I done this is all wrong” in a matter of minutes. In my case, once I’ve seen a nice pair of breasts on a Netflix show.
  6. You’re going to spend a lot of time wondering why your partner is with you when they could be with someone else who doesn’t share a temporary zip code with the cancer center. And who has hair. And who is in control of their life. And shits on a regular schedule. And who probably knows how to do winged eyeliner or some other magical craft.
  7. Your partner is going to surprise you with their kindness and understanding, and you will chastise yourself for pondering item 6.
  8. Potatoes are Satan’s gift to the world. Potato soup, mashed potatoes, lightly fried potatoes, raw potatoes, Mr. Potato Head. All amazing.
  9. You will have dreams of a day when you could brush your teeth without your gums bleeding, take a poop without bleeding, breathe…without bleeding. But then you’ll wake up.
  10. You’ll probably feel crazy and second-guess everything you think and do. It’s a real Gollum/Smeagol situation, if I’m honest. This is where it would have been helpful to have that mental health support in place.
  11. Lush bath bombs are made by kitten angels and sent to earth for your enjoyment and relaxation.
  12. BATHS. ARE. GREAT.
  13. Trying to take care of everything like you used to is a real stupid idea. Actually, this one they kind of hint at (plus, it helps to have family members who echo this sentiment), but you don’t listen because you’re so strong and can handle it.
  14. Glitter can, in fact, make things more tolerable.
  15. You will break. You will have moments of wishing that you didn’t have to see this through. End of that thought.
  16. BUT! You will get through it because, even if you don’t believe in yourself, hundreds of other people do. And you show up for the people you love, because they’re worth it.
  17. And maybe so are you.

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Edit: I forgot one! No one mentioned that the chemically-induced menopause was going to make me cry all the time. It’s onions. ONIONS.

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?

Thank You.

I have received a lot of feedback regarding this blog since I started it. The stories ranged from my best friends to people in my ex’s family. I cannot be more grateful for you- you who sent words of encouragement, you who shared your own stories, you who empathized with me. Those of you who reached out to me? Thank you eternally for your contact. It is truly wonderful to connect with you and hear your powerful narratives.

The one sentiment that I keep running across in these messages is ‘thank you for saying that’, ‘thank you for speaking out in public’, and ‘I know what that’s like’. This should not be a trend in conversation. I should not have to hear this from my peers.

I speak out (now) about my experiences because I am tired of hiding them. Am I over it? Of course. Am I sensitive to certain topics? Sure. Though I am pretty desensitized to media and communication (because of how I choose to view it), I still feel the fall-out of many assault-related incidents. I feel pain for women who are victims of campus assault. I cry for women who are victims of domestic abuse. I cry for those humans who aren’t taken seriously- who are looked at as ‘sluts’- and are shamed for their actions against their perpetrator. I see you and I hurt for you.

This post stems from a conversation I had with one of my best friends- a woman I have known for ten years- a woman who has literally seen me through the shits and shallows. She has been there for me- through cases of PBR and cases of wine- and has never wavered in her love. It’s difficult to think about life-long relationships, but she is that human for me.

Recently, we were watching Harry Potter: And the Bullshit of Bullshitzekeron and she mentioned how ‘proud’ she was of me for speaking up about my assault. It took me a minute to realize that she was talking about my rape experience- a thing I mentioned briefly along with the experience of other abuse in a blog. I didn’t even realize she was talking about that because I never bring it up. Who wants to hear about that?

It took me a hot minute.

Did I mention that?

I guess I did.

It’s not a thought to me anymore, dear readers. It is a thing that happened and it was a thing and it is in the past and goodnight. I am who I am and I have moved on, etc. But she made me reflect on that moment- who am I to ignore it? Who am I to forgive what happened? If I do, I only support that idea that assault is okay.

And so, here it is- when I was sixteen years of age, my then-boyfriend, whom I had traveled across states to see, had invited his friend over. The intentions were clear to him, apparently- not me. When said friend arrived, boyfriend blocked the door. He helped hold me down while his (and this is just me recounting the facts, not being a body-shaming dick) obese friend writhed on top of me. After it was all said and done, I was told to leave and go sleep in my designated bedroom (he was from a nice Mormon family, y’all). I was nothing. I was a shell.

The next morning, he came upstairs and whispered to me that I was a ‘slut’ and that I ‘had asked for this’. That motherfucker gas-lighted me all the way from PA to NY and all I could do was cry or internalize it. I didn’t tell anyone for years. Why would I? It was disgusting. I felt culpable. It was my fault. It was just a thing that happened because I was stupid enough to let it happen.

Thousands of women experience the same thing every single year…so why bother mentioning it?

My friend’s response to a flippant comment I made is why I bother. Women who have experienced this type of cruelty is why I bother. Women in general is why I bother BECAUSE: one out of every three women you know has been affected by sexual assault. BECAUSE: every 2 minutes an American is sexually assaulted. BECAUSE: 54% of my age group is at risk for sexual assault. Because this is important. It is not a joke.

I normally pride myself on my transparency in life- I’m not one to bullshit around the bush. But she was able to call me on something I’ve been silent about. She was right- why should I ignore the pervasive issue of female assault? One can’t ignore how it is treated in our media. Every single day we see a new case of assault- and every single day we do our best to ignore it. Someone will do something. There will be some sort of law enacted. It could never happen to me…

Our media ignores what it means to survivors of assault- it makes it okay to feature subjects where violence against females is totally acceptable. While I am a total consumer of media and understand the necessary prevalence for violence against anyone, I fail to see the fun in the idea of violence against women now. Maybe I’m getting old. I don’t know. There has to be some other way to entertain ourselves.

We don’t get to ignore this now. Women must stand up for themselves and for what they believe in. I’m not the greatest example because I took years to come to terms with my sexual assault, but I refuse to believe that it’s okay for any woman to be silent moving forward. If something happens, say something. Sitting on it is only detrimental to you. Trust me, I know.

You get to be happy.

 

 

 

 

 

Doggone It

Because talking about removing yourself (emotionally) from a relationship is the most fun I think I could ever have on a weekday.

First, let me mention how incredibly grateful I am to those of you who have responded to me and this blog. I didn’t have a goal when I started writing, and I certainly didn’t expect people to receive it the way they have. I would have never imagined that people would relate to me, and would also be impassioned enough to write me and share their stories. For that, I thank you. You make this word-vomit shitfest worth continuing. Keep sharing!

I’m currently working on distancing myself from relationships and the people in them that have hurt me. It’s hard, I think, because you spend so much of your time trying to convince yourself that the relationship can work while ignoring what you need out of it. Thus, when it’s over, you’re left with this hole in your heart and the feeling that you have to do the work to make up for the reciprocation you never received. Self-work, essentially. Having to tell yourself that you’re pretty, and smart, and worth it…because your partner never did. Or if they did, they certainly didn’t mean it.

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I’m slowly learning to stick up for myself and be an advocate of my needs and wants, but it’s hard. I’ve lived through two father figures tearing me down in various ways, too many failed male relationships, and a marriage that was based on….what, I have no idea. So naturally, I think I’ve internalized this idea that I don’t deserve to be happy, because why should I? Something about me is clearly wrong. Counselor Elspeth refutes this and says “absolutely not, not all things are meant to be, and those people have their own issues to work out. Do some daily affirmations, etc, etc.” Depressed Elspeth counters and says “Nah, girl. You’re messed up. You’re not good enough. Look at all those other eligible women. They’re better than you. They have long hair, know how to contour, and are better at social media.” How does one argue with that?

I left my ex for many reasons, but mostly because needs weren’t being met. I did everything I could (or that I knew how to do) to fix the relationship, but in the end, it just wasn’t right. There was too much apathy and resentment on his part, and not enough desire to change that. When he started seeing this “girlfriend”, I was so hurt because he was doing everything with her that I had wanted to do with him. *Further reinforcing that idea that there is something inherently wrong with me.*

But the more I reflect on that fact, and the more I see come up in my newsfeed, the more I realize that I’m just not the type of partner he was looking for. I’m not the kind of woman who posts “live, laugh, love” every five seconds. Nor am I the type of person who wants to celebrate inconsequential milestones like a 6 month anniversary with tickets to Metallica. Metallica. 

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So, distancing myself from such things may be hard, but it’s getting easier. Every day I learn more about what I want and don’t want in a relationship. I’m learning to identify red flags in potential partners- something my therapists have been talking about since I was 17, but I’m only just picking up on now. And I’m working on listening to Counselor Elspeth, even though she seems like she’s full of shit. I just don’t know…

More on this later.

PS: I’m attempting to write more frequently, but I’ve been pretty ill since last Wednesday, and over-the-counter medication cocktails just don’t have quite the same effect on my creativity as wine does. My apologies.