It's been almost four weeks since my preventive double mastectomy and reconstructive surgery. It feels a lot longer than that some days, but I also know 4 weeks really isn't that much time. The process of healing has been a lot better than I anticipated in most ways, but some things that I didn't expect to be difficult have been. I plan to share more about the emotional journey of healing in a different post soon. Today I want to share more detailed info about the surgery and recovery process, because when I first started having to research all of this I was desperate to find someone else in my similar circumstance. I wanted to hear all about the entire process, hear specific details, see photos, etc. So that's what this post is for! For other people going through something similar, for those who know someone going through something similar, and just to educate anyone who may read this on what this process looks like.
If you're new here, you can read about how I found out about my BRCA2 mutation here, my decision to have a preventive double mastectomy here, and some FAQs about BRCA and preventive mastectomy here.
Here I am hanging out in my super sexy hospital gown. Not pictured: grippy socks and compression tights. I had to be at the hospital at 5:00 AM for my 7:00 AM scheduled surgery. It's weird walking into a normal looking waiting room area when you know you're about to have a major surgery in just a couple of hours. They called me back and I talked with the pre-op nurse (medical history and all of that), got hooked up to my IV, met with the anesthesiologist, got cleaned up with antibacterial wipes (super fun having a lady come rub your boob area down for you). I took a few medications - one to prevent nausea, one to prevent clotting, and finally some valium (praise the Lord). I met with both of my surgeons before surgery to go over everything beforehand. Two of my sweet friends are both nurses at the hospital where I was having my surgery so they came to see me before I got wheeled to the OR.
Seeing familiar faces when you're about to go do something scary was seriously such a relief. My friend Erin (on my right) actually wheeled me into the OR room where Emily (on my left) and like 10 other people were waiting for me.
I've never had any type of surgery before, not even anything minor, so being wheeled into an OR room was very surreal. And I'm honestly feeling a little nauseated reliving it right now to share it with y'all. I was scared. I didn't want to be. I was making jokes and being kind to everyone but I was super freaked out. Especially when they started talking about hooking me up to anesthesia. When I knew it was about to happen I got super nervous and wanted to cry but tried really hard to hold it together. Erin and Emily were both holding my hands and they let me know as soon as they pushed the medicine that would put me to sleep. It really does happen as quickly as you think it will. You feel like you're falling asleep and there's nothing you can do about it. And then you wake up in another place and don't remember any of the last few hours. It's crazy and amazing at the same time. So even though it was really scary in the moment, suddenly the whole thing is over and done with! Am I looking forward to having surgery again in a few months? Absolutely not. But I guess it's a little bit better knowing what to expect now.
I vaguely remember leaving the OR room and being wheeled into recovery. I remember talking with the recovery nurse (who was the sweetest lady on the planet). But I was so tired and couldn't really keep my eyes open. I was awake and talking with them the whole time but it was very foggy. Nothing really hurt too badly that I can remember. I had a slight headache. And I remember having to concentrate on breathing because I guess my lungs were still "sleepy". I stayed in recovery about an hour (I think) before they brought me to my room. My plastic surgeon sends his DIEP flap reconstruction patients to the ICU for the first 24 hours (I share more about what this is in this post), not because I was in critical condition or anything, but just to monitor the blood flow to each breast every hour and make sure the arteries keep working. All I remember about getting to the room is being insanely hot. I think I had a full heated blanket on after surgery, and then they left a heating pad type thing on my chest when I got to the room. I was miserably hot. Evidenced by the photo in which I had them take all my blankets off, hiked my hospital gown up, and requested a box fan.
Thankfully once my surgeon came to check on me, he pulled the heating pad off (calling it an old school method), and cranked my AC down for me. Glory!
I remember feeling some slight soreness in those first few hours, but not too much. I mean I was just laying in bed not moving for the rest of that entire day til the next morning. I had those boot things on my legs that squeezed off and on to prevent blood clots. I also had a catheter in and was hooked up to a few monitors for my heart rate and breathing, and a blood pressure cuff that went off every hour (that's as fun as it sounds). The nurses also had to come check all my vitals and listen to the doppler things that were attached to each boob (I just feel weird saying the word breast so we are going to switch over to boob, hope that's ok) to make sure blood was flowing sufficiently. Every hour. For 24 hours. I am thankful for the monitoring but it was definitely not fun.
Around 6 AM I got my catheter removed and they got me out of bed and moved over to a chair. Because of my stomach incision, getting up and down was no joke. But it was nice to finally get up! I got to move to a regular recovery room around 10 or 11 AM since everything was going well. For the next few hours (I honestly can't remember how many) I only had to be monitored every 2 hours, and then that eventually increased to every 4 hours. I also didn't have to be hooked up to an IV stand or any other monitors besides the dopplers on my chest, but they could be plugged and unplugged so I wasn't having to lug anything around. I made myself get up and in the chair most of the time instead of laying in the bed and walked around my hospital room as much as I could tolerate.
The late afternoon of the second day I was able to get up and go for a walk in the hospital hall. It was sloooow and I couldn't stand up straight (due to my stomach incision and because I just lost a few inches of skin, everything felt really tight those first few days).
It was nice having visitors to take my mind off of being in a hospital. Before surgery I wasn't sure how I would be feeling, but I was hopeful I'd be up for company! I had to concentrate really hard on not laughing because of my stomach being in pain! But I welcomed the distraction of friends. I was getting up and down and standing up a little straighter on Friday. I was also feeling super glamorous in this fabulous outfit!
We had the option to go home on that Friday evening (surgery was Wednesday morning), but they also said we could stay another night if we wanted to. We opted to stay. One reason was because we didn't want to scramble around to change the schedule of who had the kids, and also because we felt more comfortable having one more night of nurses checking on me. We went home around 9:30 AM on Saturday! It was so nice to get out and be in my own space!
The first few days at home I spent a lot of time on the couch surrounded by pillows. I watched A LOT of TV. I would take breaks to walk some laps around the living room and kitchen because I knew moving would help me heal more quickly and keep me from going totally stir crazy. I took tylenol a few times for discomfort, but that was mainly in the evenings. I also took a muscle relaxer the first two nights home to help me sleep. The main thing I needed them for was because of my back. Hunching over was giving me major back pain the first few days. I'm thankful that subsided after the first week or two.
Showering was definitely tricky! I didn't wash my hair for the first week (thank you Lord for ponytail holders and dry shampoo), but I definitely needed to clean my body! I had drains coming out of each of my boobs, and you can't just let them freely hang down without some support or else you'll be in a lot of pain and possibly rip some stitches. So I put a lanyard on to clip them. It's as cute as it sounds ;)
I had to (and still have to) keep compression around my waist to prevent any fluid from building up around my abdominal incision. My doctor used some type of glue during my surgery which meant I didn't need to have drains from that incision as well (PRAISE BE). Here's what my get-up looked like that first week home.
Cute, I know. Between this and having to get Jonathan to help me shower, dry off, and get dressed, I definitely wasn't feeling super awesome (I'll share more about the emotional side of healing in another post). Underneath all of this looked rough, but not as terrible as I imagined. I had some bruising, and one of my nipples completely scabbed up. That was scary because I was worried that meant I was going to lose it. But it's apparently pretty common. I hope the following picture isn't too much, but I really wanted to show it for those who may be facing the same surgery and want to know what to expect. Like I mentioned earlier, seeing photos from others was incredibly helpful for me. This was one week post-op. The gray dressing covers the length of my abdominal incision.
The Thursday after my surgery I had my first post-op visit with my plastic surgeon. He took my drains out! I had no idea how uncomfortable they were making me until they were gone. The spots that they were stitched into my skin hurt and pulled any time I moved. Getting them out was seriously such an instant mood lifter and immediately made me feel more like myself!
He also took the dressing off my abdominal decision and took the stitches out. I had stitches on the drain sites, on my new belly button, and where they removed my two extra nipples. Yep...ya heard me. I had two tiny extra nipples on my abdomen. You can see where they were in the photo I shared above. They looked like moles so you wouldn't have known what they were if I never told you. My breast specialist said they're super common (she even had one), and she always removes them along with the mastectomy for her genetic patients...because it is technically breast tissue.
Week two was definitely a lot easier, but I was still having to take it really easy. I'd get tired quickly and felt pretty sore all over. But I was cleared to lift my arms, which meant I could wash my hair, shave my armpits, and put on deodorant. All of those things helped me start feeling more normal!
I had a follow up with my breast specialist during the second week, and my healing process was right on track. I go back and see her in 6 months, and we will continue with physical breast exams every 6 months until everything has settled. Physical exams will be the only type of breast cancer screening I will do from here on out.
I was feeling good enough to be able to go visit with some friends, get some easy chores done around the house, go for a walk, etc. by the third week. My kids all came back home that weekend (about 10 days post-op). I was still very sleepy at the beginning of week three, because apparently healing takes a lot of energy (who knew? ha!), and I was adjusting to mom-life again, but that's gotten better everyday. I still have to be careful how I pick up Gibson (he's 19 months old), but I can pick him up and get him in and out of bed without it being too difficult or hurting. I can walk a couple of miles and do some lower body exercises, just not too strenuous. I can't use my core muscles to get up and down still, and I'm still sleeping on my back because it is very uncomfortable to sleep on my side. I felt very sore during week three as well, but that is improving too. My incisions are looking better everyday, and I am now using a prescription scar cream on them to help them heal nicely. This photo was a little over 2 weeks post-op, and they look even better today, 25ish days post-op!
I go back to my plastic surgeon this week for a follow up, where I will hopefully get cleared to do physical therapy. My arms and chest still feel super tight when I lift my arms, and my core muscles will need some help regaining strength.
Other things to note: I don't have any feeling in my boobs. That's been weird and sometimes tough to adjust to. It feels like I have something fake or a bunch of padding stuffed in my bra. I know (at least I hope) I'll get used to this over time. Most of my abdominal incision is also numb, and the space between my belly button and the incision is also numb. Some of that feeling is coming back a little bit. The skin on my stomach felt very uncomfortable the first 2 weeks as it adjusted to being stretched so tightly. The feeling was similar to when you're 9 months pregnant and your skin is stretched to the max. That's also gotten a lot better.
All in all, the entire process has been better than I anticipated. I had no idea what exactly it would be like, but I'm so thankful it's gone as smoothly as it has. Some things are still very difficult and I have to take a minute to let myself be frustrated or sad, but mostly I am doing pretty good nearly 4 weeks post-op. I will have a follow up surgery in a few months for revisions on my abdominal scar and filling in and smoothing out anything that needs it. I'm not looking forward to having surgery again, but I'm glad I will be DONE after that. And that my risk of breast cancer dropped from 75% to less than 2%. I have not regretted my decision for a single second.
I know this post was long, but I hope it was helpful for anyone who is thinking of doing the same thing or knows someone who is! I am open and willing to answer any questions you may have, so feel free to leave them in the comments or email me at email@example.com.
I did a podcast interview 10 days post-op if you're interested in listening to that as well. Click here to listen with iTunes!