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?

To boob or not to boob?

I did it.

I finally made a decision.

Truthfully, making the decision to not pursue breast reconstruction after my upcoming mastectomy has been one of the hardest things I’ve ever had to do. I’ve barely had time to digest the idea that there’s something in my tits trying to kill me, much less have I had the time to think about parting ways with a giant chunk of my body. That must be the beauty of treatment teams- they act so quickly that you barely have time to wrap your brain around such shitty news and then you’re on the operating table.

I guess that’s why I didn’t think twice when I was scheduled to meet with a plastic surgeon to discuss my options for reconstruction. I’ve just been going to all of my appointments like a little feeling-less robot, nodding, and asking all the questions I copied from the internet (Okay Google, what’s a DIEP Flap???). I think part of me had entertained the idea that I would have reconstruction- I’m only 29, after all. But another part of me, small at the time, wondered what would happen if I didn’t? What would I look like if I didn’t have breasts? Would I be okay with having implants? Would I ever feel like me again if I went through with the reconstruction? I couldn’t pin down how I felt, other than incredibly overwhelmed. It’s not easy to grasp the concept of losing a body part that you’ve kind of grown attached to. Literally.

Before I start shitting all over everything, let me just say that the surgeon and nurse that we met with were both professional and kind, and I know they were only doing their jobs. I am sure that many women have benefited from having them on their surgical teams. But both Justin (loving and supportive partner extraordinaire) and I were unsettled by the way that reconstruction was discussed, and how it was made to sound like my only logical next step. It’s an incredibly personal decision for any woman, and they should receive support and acceptance for whatever option they choose to pursue, but should also be given proper information about ALL of those options- not just the plastic ones.

A.N.Y.W.A.Y.

Because I was still debating on what I wanted to do with my body, I asked the surgeon to give me his ‘sales pitch’, if you will, about my options, the pros and cons of each, the surgical methods, recovery time, etc. The surgeon broke out some tester implants and told me about how I would be able to “resume my normal daily activities” more easily if I had implants as opposed to prostheses. About how Justin’s daughter would feel more comfortable hugging me if I felt like the pre-surgery me. About how I would be able to wear swimsuits and low cut tops. About how it would beg less questions from people.

This isn’t what I meant. This isn’t what I want.

Oh, but good news! My nipples could be spared! Joy! I can have Barbie breasts with my own nipples- breasts that have no feeling, that serve no purpose other than to give me (read: everyone but me) the peace of mind that nothing ever happened I look like a normal woman. I can go bigger, I can go smaller, I can do whatever I want! Yet, there’s the possibility that my nipples might NOT be able to be saved and then I’d just have round orbs stuffed under my skin. But, hey, no needs for bras, right?! Hah! Knee-slapper. Giggles all around.

When pressed about the option of not reconstructing, I was given a lot of flustered bullshit about why I wouldn’t want that and how it would look if I was *gasp* flat. The surgeon actually said that I “would be one of the only women under 30 that’s made that choice”. WRONG. I asked to see photos and this poor nurse, bless her heart, could not understand why I would want to see that. Instead, she showed me photos of nipple-sparing reconstruction. When I stated that they “looked like chewed up dog toys”, she got all huffy and said “Well, that’s a very blunt assessment.”

Oh, I’m sorry I made you uncomfortable. Let me just un-develop this cancer real quick and then neither of us will have to have this disgusting interaction.

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Guess what? Having breasts does not make me any more or any less of a woman. My confidence and self-worth is not defined by what lives underneath my shirt. My gender identity is not at all affected by this surgery. When I get ripped out of that deep anesthesia sleep next Monday, I will still be me- smart, snarky, and sexy.

Over the weekend, I did a lot of research and reading about what life is like for women who choose to go breast-free. Forums were joined, questions were asked, testimonials were read. And I found that most of the women who were brave and open enough to be public about their decision were incredibly happy with it and have adapted back to their regular lives with ease. My brain and my heart finally came together and figured out that I wouldn’t be staying true to myself if I had reconstruction done. I think it was around 11:30 pm on Saturday night when I finally said ‘fuck it- time to embrace that boob-free life.’

Is it going to be hard? Yes. Am I going to have days where I regret everything? Probably, but not forever. Am I going to experience grief and loss associated with the surgery? Absolutely, and it’s totally normal. But this means that I no longer have to go through the stress of staying on top of my terrible, fiberadenoma-growing, lumpy, painful, cancer boobs.

I’m #blessed to have Justin, who has done nothing but love me and support me through this decision-making process, and who legitimately already loves my post-surgery body. No idea how that works, but it’s amazing and I am eternally grateful. I feel like he’s known the entire time that this is what I would eventually decide to do… So I might be losing my tits to cancer, but I’m not losing my life, and that’s really something.

Also, wtf surgeon. I’m the lady whose ex-husband called her a “lesbian” when she cut off her hair. So what did she do? She cut it shorter. Breast-free? Challenge fucking accepted.

 

 

The Rise and Fall of Ziggy Lucas and the Breasts from Hell

Let’s get the updates part out of the way early:

  • I met with a genetic counselor last Friday. I’ll be handing over my bodily fluids for testing tomorrow.
  • The new spots that showed up on my breast MRI were checked on Monday and appear to be more fiberadenomas. Good news!
  • I have decided to go ahead with a bilateral mastectomy. I have not, however, decided whether I would like to pursue breast reconstruction or just allow the surgery to morph me into my long dreamed of androgynous alter ego.
  • I will be meeting with a plastic surgeon tomorrow, followed by an oncologist on Monday. Here’s hoping that there will be some clarity re: treatment soon.

Fabulous. Moving on.

I don’t feel like I have ever sugar-coated my feelings here. In fact, I’ve been pretty up-front with the fact that this is one of the only places where I feel even remotely comfortable expressing my emotions. But, I do realize that some people are more sensitive than others, so here’s my little disclaimer/trigger warning/spoiler alert- I’m about to talk about some very real, and very personal shit, including suicidal feelings and ideation. So if that’s not your bag, I totally understand. At the behest of this rotten beam, I’m embracing myself.

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How are you?

That’s is *the* question, isn’t it? How do you answer someone honestly? Of course, I don’t begrudge people asking, and I appreciate knowing that people care. But I don’t feel like I can truly say how I am doing. I know, I know- this post exists on every cancer blog ever written, but it’s true. Do you actually want to burden someone with dropping the ‘I’m actually fucking terrible, Judy, but thank you for asking’ bomb on someone? No.

This past weekend, my partner and I got into a small fight that really just stemmed from a small miscommunication. I’m glad it happened though, as we were able to talk about it and dissect the feelings and emotions behind the communication fail. He was feeling scared and helpless regarding the diagnosis, and rightfully so. I was feeling overwhelmed, anxious, and overly sensitive about things. And, quite frankly, I didn’t feel comfortable with expressing how I was truly feeling because it’s not what people want to hear.

I’ve written before about the two sides of my brain, and they come into play with processing this cancer thing. A large part of me is a caretaker. I put everyone’s needs over my own, and I focus on fixing things for others long before I ever take a look at myself. So naturally, I feel guilty about having such “burdensome” feelings. I say that in quotes, because I feel like telling someone that I’d rather just quietly die than hang around through surgery, recovery, treatment, financial loss, debt, and depression is a lot for the normal person to take in. Why say all that when I could just say ‘I’m fine’ and move on? Nobody wants to know that shit (unless they’re my therapist and they’re getting paid a lot of money to ask me how I feel about that).

Look, I know I have an amazing support system backing me through this, but at my core, I still wonder if it’s even worth it for me to try. When I was meeting with the genetic counselor, she went into fine detail about all of the mutations that my genes could have that would put me at a higher risk for brain cancer (here’s where I stopped listening), pancreatic cancer, further breast cancers, etc. How I might pass them on to any children I might have. The ultrasound tech told me to be wary of reconstruction using my own tissue because it could “become necrotic (here’s where I stopped listening), thus causing more lumps”. Incredible support system or not, this is a lot to absorb in such a short amount of time.

I’ve had a pretty hard life by anyone’s standards, and it seems to be unrelenting. SOMEHOW I’m still married to a total douchecanoe, I have cancer, I’m losing my tits, and my employer is likely going to cut me off my insurance if I try to take a leave of absence to recover from said tit loss. It’s grim. I’m only twenty-nine years old- what else could happen to me in the future? Part of me really doesn’t want to find out.

BUT!

I do realize that these emotions are completely normal and a part of my grieving process. They will swell, fluctuate, and decline as things progress. Right now, I’m allowing myself to feel them, as opposed to trying to suppress them deep inside me like I normally do. This doesn’t mean I’m going to throw myself off the I-94 bridge, but it does mean I might start accepting a radically different world view. Apparently, that’s a popular reaction for people who have been diagnosed with a murdery illness- you start to figure out what, and who, really matters in your life.

And let me tell you, it’s not the 115 separate 1 page documents you want me to print out for you by 10:30 am.

PS: This is NOT to say that I don’t appreciate all the love and support people have shown me. I am so grateful that people continue to ask me how I am! Rather, this was an opportunity for me to vent about how my stupid brain functions. Or doesn’t function. Your call.