MY BILATERAL MASTECTOMY - Q and A

Aug 11

I have stage 2 breast cancer, so I had a bilateral mastectomy ten days ago. On day seven I opened the floor for questions via my Instagram story. I got quite a few thoughtful questions and even more thoughtful replies. So I made a blog version of the Mastectomy Q&A, where I expanded some answers (and removed some F words). At the end I have my own breast cancer update from the day 8 post-op appointment. Thank you for reading my story. It gives me strength to keep sharing it.

Q & A

How are you feeling physically? Emotionally? Mentally?

Physically: Chest feels sore, tight, burning. Feels like it'll rip open if I cough. But when the first person asked me what it felt like I just said, “Bro it feels like someone cut my tits off.”
The drains are the worst part - one under each arm. They took mine out on day 8 and it hurt like hell but I immediately felt so much more comfortable. While the drains were in I couldn't raise my arms - had to use them like a T-Rex. Also still can't use my right leg due to my unrelated Achilles injury and surgery (but don't have to keep it elevated anymore). How did I go pee for the first few days after surgery, you might be wondering? Bedside commode. Lots of help. I couldn't even pull my own pants down.

Emotionally: I am sad. The grief is multifaceted because my life is drastically changing forever. Since my cancer is mostly hormone fed, I'll be taking hormone blockers for years as another line of defense. This is good from a cancer fighting point of view but effectively means I'm now grieving the “no more kids” reality.

What things did your surgeon tell you (or not tell you) pre-op that ended up being surprising?

The most valuable info I got before my surgery was from women (mostly my wonderful clients) who had gone through it and shared their experiences.

But to answer the question more specifically, I was so nauseous when I woke up from surgery and that was awful. I had warned my surgeon and I wish I’d known to ask for a patch to prevent postanesthetic nausea. Throwing up 6 times after getting my chest cut open was absolutely miserable. Also, at my pre op appointment, my surgeon told me most women are surprised by how a bilateral mastectomy is less painful than they anticipated. That has not been my experience.

Thankfully, physical pain is temporary, and my recovery experience has been positive in the way that I’ve felt a little better each day.

How are you doing with sleeping upright and clearing your drains?

Ohhh the drains suck! No pun intended. I'm big on exposure therapy so I'm glad I looked up photos of them ahead of time and knew what to expect. They're long tubes (like a foot long inside my body, coming out beneath my under arms, then a couple feet long) with grenade shaped bubbles on the end. My sweet family members helped me empty them every morning. I would just tell myself it's V8 juice so I didn't puke. I also got a wedge pillow ahead of time which made sleeping on my back semi comfortable.

Did they immediately put implants in or do you heal first.. or go without?

I'm so glad you asked this! cracks knuckles

I've been struck again and again by how everyone assumes I did/ would do reconstruction/augmentation. Based on my experience, I’m pleasantly surprised you phrased the question in this way. I decided—rather easily—to go flat. The technical term is Aesthetic Flat Closure. I recognize that many (most?) women choose to do reconstruction, and I am 100% in favor of women choosing what's best for their own bodies. But I want to share because I want to add to the relatively small representation online of women who go flat. Here are a few of the reasons why I decided going flat was the best option for me:

It often takes 3+ surgeries to get reconstruction to look "right" (even if things go well)
Some women's bodies simply reject the silicone, or they experience other health issues as a result (feel free to look up Breast Implant Illness).
As a boudoir photographer, I've photographed women who have had reconstruction. I know what it looks like, and while it's similar, I’m aware of the differences. I've also heard clients express having issues with clothes not fitting them off the rack even with their reconstruction or prosthetics.
The reconstructed breasts are purely ornamental (except in the case of nipple sparing surgeries, for which not everyone is a candidate) and they are no longer sex organs as far as sensation is concerned.

I ultimately decided that I was more excited to add an aesthetic to my body after this surgery by way of tattoo. (Also, to put it more PG than I’ve said it in-person: I’ve done more than enough in service of the male gaze in my lifetime. I’m over it.)

Did you feel a lump in your chest and that's what made you go get checked for breast cancer?

YES! Thanks for asking. I did a self check in May and found a lump, made an appointment with my gynecologist, and then she had to order the mammogram. She always told me during my check-ups that I had very fibrous breasts, and would say, “Call me if you find a rock in the lumpy mashed potatoes.” Well, that’s exactly what it felt like.

I'm not old enough for routine mammograms, so the one she ordered this summer - right around my 32nd birthday - was my first. It took place 5 days after my Achilles repair surgery so if you've had a mammogram and can picture getting one (followed by an ultrasound, biopsy, and then second mammogram) on crutches, just add circus music to your mental picture and feel free to chuckle.
I remember hobbling through the clinic that day and every nurse looked at me like I was a kid who just dropped their ice cream cone. At one point I said, "If it turns out I have cancer too, I'll laugh."

I didn't laugh.

I have a mastectomy next month. What is something you wish you knew before yours?

Ugh, I'm sorry. I wish I knew I could have asked for a patch before surgery that would have prevented nausea from the anesthesia.

I am also glad for these tips I got ahead of time:

get a recliner (with remote) or borrow one like I did, as well as a wedge pillow for recovery

buy button-up shirts and pajamas to wear (lifting your arms will be impossible at first, then tough for a while)

get a long phone charger cord

binge watch some garbage on Netflix like Love is Blind Season 2 because you will relish the fact that your current experience, while miserable, is profoundly preferable to those of the participants on the show

How are your boys doing?

Jordan is holding up as best he can. With his own chronic health issues he's at his limit but still helps me in every way every day. He’s learned so much through his own health journey in the last year that he has unique patience and wisdom to share with me. As in most situations, the mental stuff is way worse than the physical pain. He consistently pulls me out of the depths.
My little guy is so sweet but gets frustrated at times. He approaches me cautiously and says, "Mama oww." I haven't been able to pick him up since the first week of June and I won't be able to for a few more weeks.

What's one thing that keeps you moving forward?

That little guy I just mentioned. He is my joy.

Just curious how your surgeon reacted to you declining reconstruction?

Like 99% of all medical staff I spoke to, he acted as though I would want it by default. I made a point to say at the beginning of our meeting that I wasn't getting reconstruction. Then, once he told me the process of surgery, he asked if I'd chosen my plastic surgeon [for reconstruction] yet. I reminded him I wasn't getting reconstruction. "You're not??" He said, surprised. So I looked him in the eyes and said, "No."

He didn't ask why.

This happened after weeks of me learning the societal expectation, having to answer to shocked, "Why not??" from medical staff, family, and friends. At this point, I was done explaining. I said no, and that was enough.

I am explaining my decision in this piece because I want others who are faced with this choice to be able to read about alternatives to what society apparently (clearly) expects them to do.

Is there anything you're looking forward to about not having boobs?

Yes: getting a giant tattoo, not worrying about nipples or bras showing, not wearing bras, and playing with my already strong love for androgynous clothing. I’ve become painfully aware of all the energy I spent regarding the appearance of my breasts over the last two decades.

I also look forward to, in a new and outward facing way, challenging gender norms because I think they're dumb and I like to ruffe feathers. (But you probably already knew that.)

When my son takes his shirt off to play with the garden hose on a hot day, you bet I’ll be taking mine off too.

Wanted to thank you for being so open about your experience.

I figured if I die of cancer, I hope my story can benefit someone else. If I live - even better! Cancer brings a lot of clarity to your life if you let it. Also, as I said before, I was able to make better decisions when other women shared their stories with me. I think the most empowering thing we can do is equip ourselves with knowledge from people we trust so we can make our own informed decisions. We need each other!

Just sending love wondering if you're getting enough support and care?

I’m still astounded that the hospital sends you home the next day after a mastectomy (sometimes even same day) but I've had tons of help from family and friends. Everything from Jordan brushing my teeth to my best friend coming over and folding laundry. My niece, a CNA, sponged bathed me on her day off. My sister came here for the entire first week and helped with everything. And of course, my amazing in-laws have been here every day caring for us and I don’t know what we’d do without them. Jordan’s Grandma cooks us so much good food and always calls to check in, too. My own parents are coming next week, too. Besides this, I get thoughtful messages and texts, gifts in the mail, throw blankets… oh, and Gin-gins. (Don’t worry guys, I have a lifetime supply at this point.) SO MANY PEOPLE have showed up for us and I’m thankful every day.

What's been the most disheartening thing about the experience?

Realizing that breast cancer is pink the same way periods in tampon commercials are blue.

MY BILATERAL MASTECTOMY - Q and A

Q & A

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A Portrait of Healing