So it happened. I did it. Prophylactic double mastectomy with DIEP flap reconstruction. I’m home from the hospital and by all measures recovering well…although I’m still terrified of something going wrong. But we’ll get to where I am now…let’s start with a recap.
Surgery day: Woke up at 5am in our Air BnB to drink 16 oz of gatorade and take my pre-op meds. Followed this up with a shower with special antibacterial soap. Then around 5:45am we headed out the door a drove the couple miles to the hospital. I was checked in and promptly whisked into my pre-op room. I first met with a nurse who set me up with an IV port, then checked in with my breast surgeon, met the anesthesiologist, and saw my plastic surgeon and his co-surgeon. After about an hour in the pre-op room it was time to kiss my spouse goodbye and get wheeled off to the operating room.
I saw my surgeons and nurses in the big bright room, and took a moment to access the visualization from the meditation I’d been doing for the last 2 weeks. The anesthesiologist came over, and as my breast surgeon told me a funny story about her daughter’s school picture day I slipped into unconsciousness.
7 hours later (1 hour earlier than anticipated) I was waking up in the recovery room. My spouse and a nurse were by my side. I stayed there for 4 hours while the nurse monitored the bloodflow to my new DIEP flap foobs and made sure I didn’t have any major reaction to coming out from under anesthesia. During my 4 hours in the PACU I got one dose of opioid pain killers…and so far that’s the only one I’ve needed (I actually didn’t even need that one, but the nurse sort of insisted).
Shortly after 7pm I was wheeled up to my room. My spouse stayed by my side, feeding me ice chips and for a couple hours until I could no longer keep my eyes open. From about 9pm on I drifted in and out of sleep, having some seriously trippy lucid dreams, for the rest of the night. That first night I had to stay in bed and move minimally to avoid harming the tenuous new bloodflow. Nurses were in every hour to check my vitals, empty my drains, and use a doppler to check the bloodflow in the flaps. All the while inflatable compression boots squeezed my calves trying to minimize the risk of blood clots. I had to sleep under a inflatable heated blanket called a bear hugger, which was god-awful and hot…and triggered some of the worst hot flashes I’ve had. All night the nurses were pleased with how the bloodflow to my flaps was holding up. The only issue I encountered was that my blood pressure got pretty low for a while…hanging out around 83/50…which the nurses were not very happy about. The pushed fluids aggressively and by morning my BP was up solidly into the 90s.
Post-op Day 1: My breast surgeon came early in the morning to check on me and gave me the all clear to sit more upright and eat/drink clear fluids. After 36 hours without food, Italian Ice and ginger ale tasted magical. Since I managed to keep down the fluids, I was quickly cleared to eat solids and my spouse went down to the hospital Starbucks and got me an iced coffee and a croissant. That iced coffee made me feel like a human again!
By now my doppler/vital checks were spaced out to every 2 hours, which was such a nice relief. Then after lunch they removed my catheter and with a lot of help from the nurses I was able to move from the hospital bed to a recliner chair and waddle to the bathroom. There were sharp pains in my abdomen when I moved, but once I was up it felt ok. I pretty much just veged for the rest of that day. Getting out of bed and into the recliner was my big victory for the day.
By evening I had developed a low grade fever…around 100 degrees. The nurses believed it was due to post-operative congestion in my lungs that was at risk for developing pneumonia. So I had to diligently use my incentive spirometer to try to get my lungs clear. Damn, the deep breaths were really painful. And even more painful was the coughing that sometimes followed. They told me to brace my abdominal incision by hugging a pillow when I coughed, but it didn’t do much to provide relief.
From about 9pm on I dozed between my nurse checks every two hours.
Post-op day 2: At 6:30am my plastic surgeon arrived to take a look at everything. He was pleased by my healing so far and told me my mission for the day was to get up and walking the hospital halls.
My wonderful nurse helped to get cleaned up with wet washcloths, helped me brush my teeth, and then it was off to walk the halls. The first time out walking I was really tentative. But by afternoon I was feeling stronger and excited about being on the move. My checks were moved to every 4 hours. I ate pretty well during the day and was particularly excited when my dad came to visit and brought my favorite protein bars. I hung out with my dad for a couple hours and the rest of my day consisted of watching TV, eating, resting, and taking walks with my nurse. I was worn out and ready for bed again by about 9pm.
It was easier to get some solid chunks of sleep now that my checks were every 4 hours. However, my fever returned overnight so I had to double down with the incentive spirometer to keep my lungs clear.
Post-op day 3 – My breast surgeon and plastic surgeon’s associate both came to check on me and cleared me for discharge. I was also given a new mission for the day – shower. So after breakfast I went for another hallway walk, and then my nurse and I set off on the epic task of the first shower. Even though I sat on a stool for the majority of the shower it was surprisingly exhausting. I dozed off in my chair for a little before lunch and then just watched TV until my spouse arrived for discharge.
On the ride home I clutched my mastectomy pillow tight to my body to minimize the pain from the little bumps along the road…and thankfully I made it home in one piece.
I feel really mixed about being home. I love being back with my family, but feel anxious without the constant checking from the nurses. I got some decent sleep last night but woke up at 6:30 and couldn’t fall back asleep. Of course, I’ve not been able to nap either.
Post-op day 4 – Here we are…today. I love the freedom of being home. I managed to make myself coffee, get a yogurt from the fridge for breakfast, and get myself dressed. I don’t have to ask for help to go to the bathroom, and I am not confined to a tiny hospital room.
However, there have been some challenges too. I got a little clog in one of my drains today…because I didn’t check them all night while I slept. (Lesson learned). I also have developed a minor rash…which my doc thinks is probably due to a medication. But probably the hardest thing about being home is seeing my body. I was pretty sheltered from the good, bad, and ugly of it all while I was in the hospital, but at home there is no hiding. Being totally honest, it’s hard to look at my body right now. It looks brutalized…cut through, bruised, un-natural. It doesn’t look like mine. When I take a step back I can appreciate the wonderful work my surgeon did, but in the moment it feels unsettling. I also feel incredibly self-conscious with how up close and personal by spouse has had to be with my post-surgical body. But he’s helped me shower and cleared my drains, taken pictures of my rash, etc. It’s a really intense (and jarring) intimacy. I fear that he’s never going to see by body as attractive again, no matter how many zillion times he reassures me.
So that’s been my last few days. In short, I am incredibly relieved that surgery went well and recovery has been fairly smooth. There’s been a couple little bumps in the road…but the biggest bumps are the mental ones. I just keep telling myself that this is a long healing process, and there will be many more ups and downs a long the way….all I can do is take care of myself the best I can and trust the good work of my doctors.