Hello from the other side

First time going home with Mom and Lance

First time going home with Mom and Lance

 

For context on my BRCA1 mutation and decision to have a preventative mastectomy, read my original post here.

One week ago I woke up in the recovery room, sore all over after five hours of surgery, boobless, groggy, and with a heavily reduced lifetime risk of breast cancer. There was a tightness that made it hard to breathe and the nurses were talking to me in soft, low voices. I was falling in and out of consciousness but even then, felt relieved that the worst was over.

 
Not cute, but alive and cancer-free

Not cute, but alive and cancer-free

First time standing up!

First time standing up!

First time walking and I went to the bathroom allllll by myself :-)

First time walking and I went to the bathroom allllll by myself :-)

 

My mom and brother came into the recovery room and when I realized I really, really had to pee, I stubbornly insisted on walking to the bathroom rather than using a bedpan in front of 5 other people. The first time I stood up, the nurses had to take off the breathing tube plugged into my nose, and all the equipment taped to my body to measure my vitals. My entire body felt heavy and not my own.

 
All smiles at 6AM before my 5 hour surgery

All smiles at 6AM before my 5 hour surgery

Last goodbye before the operating room

Last goodbye before the operating room

 

The morning before surgery was a carousel of doctors, nurses, and staff. They gave me Tylenol and nerve blockers to help bolster the IV cocktail they’d pump into me during surgery (and can I just say thank you Lord for modern painkillers). The plastic surgeon drew incision marks on me in purple ink - I freaked out when he started making huge marks under my boobs, but he said they were “just in case” the mastectomy surgeon couldn’t get everything out through the smaller opening above my nipples. They told me it ended up being a “struggle” but luckily made it work as planned.

My mom had some complications with anesthesia during her mastectomy earlier this year, so I mentioned to the medical staff. They gave me some stuff before and during surgery to help with nausea. Fortunately I didn’t have any issues, and have been able to eat normally since then.

 
I love this bed with all my heart and miss it so

I love this bed with all my heart and miss it so

This is the selfie I sent in response to well wishes when I woke up and words were hard

This is the selfie I sent in response to well wishes when I woke up and words were hard

 

When I got home, I really missed my remote-controlled hospital bed. I spent most of the week in my reclining couch, and figured out a way to sit up by kind of hooking my feet around the footrest and using my core to muscle up without putting my hands down for balance. Considering I had three functioning brain cells left I was pretty impressed with myself. 

So far, I’ve spent 95% of my time horizontal and have gotten through a lot of Gilmore Girls. Pain comes and goes but it gets better every day, and I have lots of meds to help. Mornings are worse. Mobility is improving and I can use my arms in limited capacities at certain angles.

In the wise words of my cousin Kristen, “You don’t realize how connected your whole body is until you can’t do the most basic things.” The first few days I wasn’t able to use my arms at all, and had to figure out how to sit up without even using them to balance (I told my nurses I’d been working out my abs in preparation!!). It was a humbling experience to go from being active to needing help with literally everything. I had to ask Lance or my mom to open my pill jars, pour me water, unzip my toiletries bag, make my food, put my clothes on, fasten my seatbelt, wash my dishes, hold my purse... It made me realize how much of my identity stems from my sense of independence and self-sufficiency. 

My mom and brother were with me through the entire process and saw to my every need. They came up from LA a few days before, drove me to the hospital, and have been doing everything for me at home. I found out Lance took an unpaid week off a new job to help me, and was the sweetest he’s ever been during his stay. My mom has been doing the work of two parents: she drove up early, slept with me overnight in the hospital, helped me eat my first meal, administered physical therapy to me, and has been cooking up a storm since coming home. 

 
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My mom also empties my drains twice a day. They are arguably one of the worst parts of surgery - there are tubes coiled up inside me to catch any extra fluid my body can’t get rid of naturally. The first few days they were mostly blood, and have become steadily clearer over time. We have to measure how much fluid they collect, and the doctors will remove my drains when I’m consistently producing less than 30cc of liquid per day - probably next week. The drain sites are kind of itchy and uncomfortable but overall not horrible. This velcro belt they gave me to hold them is the best, considering my mom had to safety pin her drains to her clothes.

 
First post op, having a great time! The adhesive on that bandage was no joke people!!!

First post op, having a great time! The adhesive on that bandage was no joke people!!!

 

I had my first post-op appointment today, and everything went well. For the last week, the whole thing still felt half real because I didn’t know what I look like - the physical consequences hadn’t fully sunk in. When they changed my dressing this afternoon, I finally got to see under the bandages. 

The incisions along the top of my nipples are tiny and I’m amazed they were able to take everything out and fit the expanders in - let alone that they’ll be able to put the entire implants back through them. I was told “skin is very stretchy.” When it heals, I’m hoping the scars will be barely noticeable. 

The left side is a bit more swollen and I’ve had more pain there, so they prescribed another antibiotic as precaution against infection (no serious concerns yet!). Since there’s also lots of scabbing around the incisions, they’re going to wait for everything to heal before starting expansion - so we’ll start about one month post-op. It’ll take a bit longer to work towards the new boobs, but better safe than sorry.

I knew I would lose feeling, but it was still weird and sad the first time the nurse took off my bandages and touched me. I could see her hand pressing into me but other than that, she might as well have been touching a stranger’s body. Of everything so far, that made this whole experience feel real. I have some skin sensation - I can trace a finger in between my boobs and feel it, but then I cross over an invisible line and I’m completely numb. I can feel an ache and soreness deep down when the expanders push down into my muscles, but other than that - nothing. My doctor says I’ll regain more feeling in my skin as time passes, but it’ll never reach all the way to the center of my breasts, or my nipples.

 
First time changing the dressing - we switched to much smaller bandages over the incisions on my nipples. The slight bulge and rippling on my chest is from the empty expanders. They’ll be gradually filled with liquid to stretch my skin, then swapped for permanent implants in 4-6 months.

First time changing the dressing - we switched to much smaller bandages over the incisions on my nipples. The slight bulge and rippling on my chest is from the empty expanders. They’ll be gradually filled with liquid to stretch my skin, then swapped for permanent implants in 4-6 months.

 

I’ll be off work for another 5 weeks while I slowly regain energy and start the expansion process. My reconstruction surgery will be later this year or early next; I’ll check in with my plastic surgeon at Stanford when I’m close to the expander size I want. 

Recovery is a long road, but it feels so good to be on the other side. I knew what I was signing up for and everything has been going as well as I could have hoped. My MRI results in February were clean, and they didn’t expect to find anything more during surgery, but my doctor called Saturday to let me know the tissue samples they took in the OR came back cancer-free. It was a great, reassuring feeling to know I’d really gotten ahead of this thing.

My last memory before going under was of my mastectomy surgeon serenading me with Coldplay. She’s known for singing her patients to sleep and takes requests in advance. I picked the song “Fix You” - it’s funny because once I woke up, I’d be fixed. One of the nurses placed the lyric sheet on top of my medical charts before I headed into surgery, calling it “the number one most important piece of paper Dr. Esserman looks at for each patient.” 

When they wheeled me into the OR, Dr. Esserman was practicing to a karaoke version streaming from her phone. The nurses slid me onto the table, and she held my hands to her chest. When she got to the lyrics, “I will try to fix you,” she shook her head. 

“These lyrics are off. I won’t try to fix you, I WILL fix you.” 

Spoiler alert: she did.

:-)