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!

giphy

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.

*
*
*
*

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?

Anesthesia is a helluva drug.

Before I describe in great detail the best parts of my surgery (who begs for a catheter?) and subsequent recovery, I want to give everyone a massive thank you. I am absolutely floored by the outpouring of love, kindness, and support from people, some of whom I’ve never even met. If you know me, you know these last two years have not been super kind to me, but the amount of people that have turned out to back me makes it apparent that I am beyond #blessed, and that I am surrounded by an incredible community. You all have come together and have wasted little time in letting me know that I am loved. I am truly overwhelmed and beyond grateful- no one is better set to kick cancer’s ass than I am.

giphy1

After having made the decision to be flat and fabulous, I used my last Saturday with boobs to celebrate them. Even though they’ve only ever caused me trouble, they were still the center of attention at the Boob-Voyage. Yet again, I was humbled by the crazy support and love that my community is capable of. You guys have no idea how AWESOME you are! We drank, we ate, we gave kudos to the tatas in our lives, and it was a wonderful way to send these bags of rude fat off into the surgical beyond.

IMG_0307

Justin and I spent Sunday preparing for the hospital and the weeks to come. He was even sweet enough to include a cemetery detour in our last bike ride (#relationshipgoals). Neither of us could sleep, so we calmed our nerves with RuPaul’s Drag Race and three wedges of cheese. They told me I couldn’t eat for 24 hours, sooooooo….

At 5am on Monday, Justin, Lauren and I rolled out to the hospital to check in for my bilateral mastectomy. I don’t know how they were feeling, but I was glad that they were there with me and were both in good spirits! It made my walk back to the surgical wing seem less daunting somehow. I didn’t feel like I was walking to the gallows or anything, but it certainly wasn’t easy to go it alone. Undressing for the last time was surreal. I even said goodbye to my bra (as if we might never cross paths again) and slipped into my purple paper surgical gown. Très chic!

Because it’s me and because this journey wouldn’t be complete without one more person assuming that I would someday pursue fake tits, my surgeon described the procedure in terms that left me open to the option.

“When you get reconstruction…”

If you decide to reconstruct…”

BRUH, I AM NOT INTERESTED IN GIVING ANYONE THE ILLUSION THAT I MISS THINGS THAT ARE ACTIVELY TRYING TO KILL ME.

At this point, I think the nurse realized I needed whatever drug she kept talking up as “relaxation medication” and injected that into my IV. From here, I remember very little until I woke up in the dark (but in the light?) needing to pee badly. I couldn’t pee, so the nurses put a catheter in me. I have never felt so relieved. I believe I was then moved to my room where Justin was waiting.

I needed to pee again about ten minutes later. Again, I couldn’t figure out how those muscles worked, so I begged the nurse to put a catheter in me. She declined and stuffed a bed pan underneath me. Justin and I then had this conversation:

Elspeth: Did you talk to the surgeon?

Justin: Yes. The surgery went well. However, you were under for about 4 hours because they found cancer in your lymph nodes on your left side. 

E: **Single tear, unintelligible sad noises** Did you call my mom?

J: Yes, we talked. She knows.

E: Where am I?

And then, because anesthesia gives you the short term memory of a goldfish…

E: Did you talk to the surgeon?

J: Yes…

I made him break the terrible news to me over and over and over again until a nurse came in.

E: Did you call…

Nurse walks in.

E: I’m sitting in cold urine.

When I finally came to enough to understand where I was, I found out that I had been in surgery for over four hours. The surgeon had done a sentinel node biopsy and found cancer cells in my lymph nodes, causing him to have to remove about eight nodes on my left side. Unfortunately, we wouldn’t know the specifics until pathology came back. All I knew at the time was that I was in incredible pain, but that some lovable idiot had hooked me up to a morphine drip (score).

My surgery had gone well, thankfully, and I only had two Jackson-Pratt drains sewn into my chest. They absorb your bodily fluids to reduce swelling and pain, but they’re a right pain in the arse themselves. Justin and I enjoy seeing all the gross shit my body can produce, so there’s a bright side. I had many wonderful visitors come to bring me salty snacks and their love. I was up and moving long before I thought I would be.

IMG_0306

Thankfully, I was only in the hospital until Tuesday evening. My surgeon brought us the pathology report which stated that there was only cancer found in one lymph node (YAS) and then sent me home. I have to wait until I meet with my oncologist tomorrow to hear about actual treatment routes. Who knows what will happen? Chemo and radiation still remain on the table. Tamoxifen for 5-10 years will most likely be a definite.

My body is not used to being horizontal and sedentary. I am not used to letting people take care of me. All of this has been a learning experience, and I can only imagine it will become more difficult (I’m not allowed to lift a fucking coffee mug right now). When I left the hospital, my chest, back, and arms were pretty numb. I am currently regrowing nerve pathways to those places and, let me tell you, it does not feel nice.

But the one thing I can say about this surgery is that I feel GOOD. I looked at my body three days after the operation and I felt positive. I didn’t see what I expected to see- I saw a strong woman who looked even better than she had before. A woman who wasn’t mangled, ruined, or socially-unacceptable. I was simply me. Feeling that was more empowering than anything I’ve ever felt. I love me, my partner loves me, my family loves me, and this incredible community loves me. It’s more than I could ever ask for. And thanks to all of you, I look fly as hell:

IMG_0303

.
.
.
.

More updates to come, I promise. And please disregard my writing. Hydrocodone was made for taking naps and not feeling feelings. It isn’t the greatest catalyst for wordsmithing.

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.

giphy

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.