Bilateral Mastectomy Surgery: Tootaloo Titties

I had my bilateral mastectomy surgery on June 18th. I’ve had this post in draft form since before the surgery, but the emotional weight of it prevented me from finishing it and posting. To be honest, I had a lot more anxiety than I anticipated leading up to the surgery.  I feared I would be a fluke outlier, and have something go wrong and die on the table. 

Surprise- I didn’t! Here I am, with my chest and left armpit sore as f*ck, wearing a drain belt for my surgical drains and looking more like a cancer patient than ever. In the spirit of Punk’d, my eyebrows decided to fall out a month after finishing chemo.  I had thought my eyebrows would escape unscathed, but instead, they have jumped ship as the hair on my head works hard on growing in.  As my sister says, you can pencil your eyebrows in, but you can’t do that for your head hair, so I’ll take it. 

I had initially wanted to have a Tootaloo Titties send-off party before my surgery, but COVID made that impossible.  My sister did make me some boob cupcakes, which were delicious!! 

So what did my bilateral mastectomy entail? During the surgery, my breast surgeon removed all the breast tissue from both of my breasts. I had a skin-sparing mastectomy, which means that the surgeon removed my nipple and areola but save the remaining skin of my breasts.  Some women are able to have a nipple-sparing mastectomy, but because my cancer was very close to my nipple that wasn’t possible for me. 

On my left side, where I had the tumor, my surgeon also performed a sentinel node biopsy during my surgery.  She made an incision into my left armpit and removed my “sentinel nodes.” These are the first few lymph nodes to which the cancer cells would travel from my breast. The lymph nodes were sent to pathology in real-time and unfortunately came back positive for cancer cells. As a result, I ended up having an axillary node dissection, which means that the lymph nodes from my left armpit were removed as well. It increases my risk for something called lymphedema, or swelling in the affected arm, because the lymph fluid may not properly find another way to drain. My left arm is now considered a “restricted limb” for the rest of my life and I can’t have blood drawn or my blood pressure taken from it.  All I can do is hope that I don’t develop lymphedema because it’s a real bitch that can flare up from simple things like working out, getting a tiny cut, sunburn or any other small insult that you wouldn’t otherwise think twice about.

I went into surgery right around 2 p.m. and woke up around 8 p.m. As anxious as I was leading up to the surgery, on the actual day, I felt alright. I wore my “Cancer picked the wrong T-shirt” to the hospital, which was appreciated by the nurse checking me in.  I arrived at the hospital at 11:25 a.m. and was in for pre-op prep fairly quickly. 

I got some sort of sedative/wonder drug in my IV while I was getting nerve blocks done before surgery, and let me tell you it was BLISS. If you don’t believe me, see pic below. If you see someone who looks like this, she either really needs help, or she has already attained Nirvana, so just let her be.

In case you’re wondering, the hospital stay for a bilateral mastectomy is a whopping 1 night. I was in the hospital for a grand total of 24 hours. 

I also had tissue expanders put in during my surgery, which are temporary implants that can be filled slowly over time so that your body can heal and adjust slowly to the expansion. Eventually, when I am done with radiation and my skin has healed for 4-6 months, I will have another surgery to exchange my tissue expanders with permanent implants.

Recovery hasn’t been easy.  I found recovery from my 2 c-sections easier. I have to sleep on a firm foam wedge because I can’t get myself up easily. Simple things like grabbing water from my night stand are not easy.  We had to bring up a rolling cart to act as my interim nightstand so that it can pulled to the right angle for me to able to reach my water and phone and other things. 

The range of motion in my arms is limited, especially in my left arm where they removed the lymph nodes from my armpit. On most days it feels like there is a knotted ball in my left armpit, which I think is the drain.  By the way, if you’re wondering what the drains look like, here you go.

I had 4 of them in total, 2 on each side.  Each had to be emptied twice daily and its contents recorded in a spreadsheet type print-out. They can be removed after they reach a certain output. I was able to have 2 drains (1 from each side) removed a week post-op. The average timeline for all drains to come out is 2 weeks.  The removal of one was fine but the other really stung. I am really nervous about having the remaining drain in my left side removed, because it extends right up into my armpit and I suspect that it is going to huuuurt. 

It’s really hard to be back in recovery mode.  In the 2 days before surgery, I ran 6 miles. Now, I can’t lift anything more than 5 pounds. I’m afraid to sit near the kids, lest I take a foot or elbow to the chest.  L has asked me multiple times to hold him, and I can’t. I can only offer him my hand. There are times I cannot pull my own pants up after going to the bathroom because I am hit by stabbing burning pain in my left breast area.  This is apparently nerve pain.  It feels like I’m being branded by a hot poker.  Luckily it doesn’t last long, but it definitely robs me of breath when it happens.  It happens suddenly and without warning. I realized I’m walking kind of hunched over and stiffly because I can’t swing my arms normally. I am diligently doing the PT exercises as instructed, but I’m terrified of developing restrictive scar tissue, called cording.  I can’t forget about my chest because it is in some form of discomfort/pain daily. 

These new melons better be worth it.  Cancer is a fucking bitch, but so am I. That’s all I gotta say.