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Day 2 of recovery

Total hospital stay after my prophylactic bilateral mastectomy was just a tad over two days. I was not up to or interested in any friends/other family visiting while I was there. Sitting up in bed was challenging and exhausting enough.

The morning of discharge, I saw both surgeons, had a few more hospital staff visitors, and got the discharge paperwork. Prior to surgery I made a list of questions we had to get answered before leaving the hospital, so we gathered the info:

How and when do I empty the drains? A nurse demonstrated how to do this properly. The drains need to be emptied at least twice per day.
Do I need to change the dressings? No, leave as is until the follow up appointment and further instructions from the plastic surgeon.
When is my follow up appointment? Friday morning (3 days post-op).
Can I shower? Not right away. Take a sponge bath or use baby wipes, until told otherwise.
Who do I contact in case of emergency or if I have questions after-hours? Call the plastic surgeon’s office. If after-hours, the answering service knows how to reach him.
When do I get the pathology results? They will be available in about a week. Make an appointment with the breast surgeon.

Pink Passion gown

I put on the super-awesome gown that was dropped off by the local Pink Passion Breast Cancer Support Group coordinator. It opens in the front, has flaps on each side of the chest for easy access, and has huge inside pockets to hold the drains. The hubby got the car warmed up and brought it to the front door, where I was taken in a wheelchair by one of the nurses.

Finally home

Borrowing a recliner is the best thing I did to prep for the recovery. It is an electric one, so I don’t have to pull the lever to use it. It is set up downstairs in the living room, with a bunch of the stuff from my checklist spread out around it. I could rest and sleep comfortably without worrying about turning over in the middle of the night.

Bathroom breaks

Prune juice

Getting the medication dosage and timing right took a couple of tries, but once I got it nailed down, I was doing great. The trips to the bathroom decreased since I was off the IV, but I made it a point to try to go every four hours when I woke up for meds. I was conscious of the fact that I hadn’t gone #2 yet, but not freaking out. Since the stool softener (Colace) was the only thing that got me nauseous, I stopped taking it and started downing Sunsweet Prune Juice. This worked! Also, each time I got up, I took at least two laps around the house to get the blood flowing.

Drain management

Emptying the drains was a bit overwhelming at first, but became just a normal thing we had to do. Hubby and I did this two times per day. Gear: rubber gloves, alcohol swabs, measuring cups, note pad, and pen. Each reservoir was emptied, the volume recorded, the port/hole wiped with an alcohol swab, the drain “charged,” and the fluid flushed down the toilet. The drain tubes were interesting (one might also use the word “gross”) to look at. There were clots visible in the lines, but not a problem. The fluids kept draining, so everything was good.

Clot

More fun stuff coming next, but first, an important announcement from Grumpy Cat, a.k.a. Tardar Sauce.

Day 1 of recovery

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Mobility

Although getting in and out of bed got easier, I was still unable to manage a trip to the bathroom in under 15 minutes. A nurse was called in each time I had to go. The feel-good button, the call nurse/TV remote, the oxygen tube, and the finger pulse oximeter clamp had to be removed before I even sat up. The IV bag was attached to the stand, we gathered up all four drains, hubby made sure my naked ass wasn’t completely bare and off we went. By about noon, we were able to do it without a nurse.

I started doing range of motion exercises while still at the hospital. If you haven’t already seen the video from Casey Eischen in my Post-op exercises post, make sure you check it out.

2/1: Check out a more recent post about exercise and nutrition: Foobie Fitness

Drains

Drain

On the day of surgery and day 1 of recovery nurses emptied my drains. They weren’t the typical JP bulb-type ones, but oval hemovac spring evacuators. Each reservoir was labeled left/right and anterior/posterior. The fluid collected was measured and then recorded. Emptying them was not difficult; keeping them untangled was. Rather than coming out of my sides, the tubes exited my armpits. This placement made for a lot of discomfort anytime my arms were moving (= all the time).

Wound dressing

There was gauze and tape in the armpits for the drain tube sites; the incisions were covered by sterile strips; and the whole chest was wrapped in an ace bandage. Due to the meds, I didn’t feel much pain, but did feel discomfort and pressure – like an elephant sitting on my chest.

Dressings

Food

DOs On the day of surgery I was on a liquid diet, but it wasn’t even relevant as I was not hungry at all. I downed crackers and a lot of water. Hall’s Vitamin C cough drops helped with the dry mouth and throat. There was a menu in my room and food service staff came around collecting orders. I was worried about constipation, so I focused on high-fiber snacks and meals. Breakfast of choice was plain, bland, tasteless oatmeal. Lunch: dressing-less garden salad. Dinner: mushroom soup.

Spirometer

In-between meals and trips to the bathroom, I did breathing exercises using the spirometer. It is a plastic box with a tube attached to it, used to get the lungs back up to full capacity and to prevent pneumonia. You inhale through the tube and try to keep the ball in the air. This gizmo came home with me to continue the exercises.

Pain management and discharge

Typically patients return home after one night’s stay in the hospital. The throngs of nurses, residents, coordinators, and doctors (I really lost count) make their rounds in the morning to see how things are going. My breast surgeon determined I was in great shape and ready to go. The nurses started the process to ween me off the morphine and transition to my prescribed narcotics (Demerol). Don’t know who or why the call was made to give me something different than what I would have at home, but they started me on Norco. Pepcid AC and Colace joined the party too. This is about when the morphine itch started. The back scratcher was my best friend.

I just needed to see the plastic surgeon for his blessing to head home. He ended up with a couple of emergency patients and did not make it to see me. After we spoke via telephone I had the option to go home and start on the Demerol or stay another night and get a prescription for Norco filled when the pharmacy opened. I opted to say and not risk being in pain without access to a remedy.

That night was uneventful. On to Day 2 of recovery.

The big day

Final preparations

Note During the last few days before surgery, I made final preparations for the big day. One of them being picking up my dad from the airport. He surprised me the Thursday before surgery by telling me he purchased his ticket to fly in from Europe to spend a month out here and help my husband take care of me. A great relief to have an extra set of hands. It’s nice to have dad here, but I plan on making a quick recovery, so I hope he doesn’t get bored!

I received two separate calls from the hospital the day before the procedure confirming we were still a “go.” I got a lot of detailed information about the timeline and what the day would look like. I confirmed that 1. I would be in a private room (space for hubby AND dad to spend the night) and 2. the hospital has wi-fi.

The night before surgery, I made sure the recliner and area around it were ready for my return home. I gathered all of the things mentioned on my checklist, without exception. I packed my hospital bag with all of the necessities and hit the sack early. I was expecting to have a bit of anxiety in the last few days leading up to the surgery, so I had my doctor write me a prescription for Ativan. The bottle is still full. I was a bit nervous, but not as much as I thought I would be.

The morning of my prophylactic bilateral mastectomy

ID and FALL RISK wrist bands

I was told to be at the hospital by 5:30am, with surgery scheduled to start at 7:30am. We arrived a bit early and waited to get checked in. The receptionist confirmed my name and date of birth and tagged me with my wrist band and the handy-dandy “FALL RISK” warning bracelet.

About 30 minutes later, I was called back by the pre-op nurse. She took my vitals, had me change into a Bair Paws gown (nothing underneath), and asked for a urine sample. We went over all of the paperwork, including consent forms I already signed. I was sure to point out that I didn’t consent to residents or fellows performing any part of the procedure, which was noted. She got my compression socks and booties on and hooked up, another nurse came in and got my IV line in, and then hubby and dad were called in to see me.

Compression socks and booties

Incision markings

A few different nurses, the anesthesiologist, and both surgeons stopped by. I mentioned that I would love to not have any nausea once I woke up and they gave me something. The plastic surgeon marked up my chest wall for the smiley face incisions (with his high-tech Sharpie). BTW, I am 5’4″, 125lbs, and 34A.

I spent a few more minutes with the family and then it was time to roll out. I was wheeled to the operating room where I got to meet a few more of the surgical staff. I scooted over to the operating table, got my arms strapped in and that is all I remember.

The surgery took over five hours: three hours for the mastectomy, two and a half for the expander placement. The fam got regular updates from the operating room (five total) via telephone call into the waiting room. Each surgeon came out to speak with them when their piece was over.

Recovery room

I woke up in the recovery room with a nurse watching my vitals. She made sure I was comfortable and wasn’t feeling nauseous. After an hour another nurse came over to wheel me to my room. While he was there prepping, I had a very sudden wave of nausea wash over me. Got an injection of something and an alcohol swab to sniff (this actually helped) . Once I was OK, we made the trip to my room.

I had a bit of a hard time moving to the bed once in the room. The nurse offered his arm and started pulling me over, but that was painful. We decided to just have his arm available and I would pull instead. I think he got impatient and gave me a little yank at the end. I finally settled in and after about 20 minutes my husband and dad came to my room.

I was hooked up to a morphine drip, which delivered a steady flow of the golden juice. I also had a button I could push for an extra kick that could be added (only every 10 mins). The machine kept track of how often extra meds were requested and how many times it actually delivered. That day I had over 20 requests, but only 12 deliveries, if I remember correctly.

I ate crackers and drank a lot of water. I made my first trip to the bathroom around 7pm. Getting out of bed was rough – needed two people to help to and in the bathroom: one to manage the drains and the other to help on the toilet. Although I felt the need to go, I had a rough time making my body obey. I peed in a “hat” that measured the output which was recorded by the nurse. I made a total of four trips to pee the first night, with each one easier than the last.

It only gets better from here! On to Day 1 of recovery.

Post-op exercises

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Check out this awesome video from Casey Eischen, BS, CSCS, CPT, CES, Health/Fitness Expert and Nutrition Coach, providing levels 1 & 2 of a great exercise program for women who have undergone a prophylactic bilateral mastectomy. More to come!

Exercises to Recovery from Phophylactic Mastectomy/Reconstruction

2/1: Check out a more recent post about exercise and nutrition: Foobie Fitness

Last details

Exercises to Recovery from Phophylactic Mastectomy/Reconstruction

Preparing for surgery

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I have seen many different lists outlining what you should do before surgery, what to take to the hospital, and how to make your life easier through recovery. Check out the Mastectomy Surgery Checklist from FORCE, a prep guide and a checklist from MyDestiny.

Here’s the list I kept for myself (after-surgery updates included) .

Preparing your body:

Get in the best physical shape you can manage before the surgery. The healthier the body, the more tolerant it is to trauma and the faster it recovers. ¤ YES! But lay off the push-ups and focus on core and legs. Note: I chose reconstruction via tissue expanders/implants, which directly impacts the pectoralis major muscle. Your doctor may offer different advice based on type of recon (or no recon).
Constipation can be an issue after pain medication and anesthesia. Two weeks pre-surgery start getting more fluids (avoid caffeine), fiber, flax seed, prunes, or prune juice in your diet. You can also purchase an over-the-counter stool softener. ¤ Colace was the only medication that made me nauseous. I stopped taking it. Sunsweet prune juice did the trick. I went #2 on day five.

Preparing your home:

Rent a recliner or a hospital bed. Alternatively use lots of pillows, buy a wedge pillow or get yourself a BedLounge. Because of drains you will not be able to sleep on your side and obviously can’t sleep on your stomach. Pillows are crucial if you don’t normally sleep flat on your back. Most women report that sleeping at a 45 degree angle seems to be most comfortable. Buy one of those c-shaped travel pillows to help support your neck. ¤ I borrowed an electric recliner from a friend. Covered it with a vinyl sheet and a sterile white one. BEST THING EVER.
Buy or borrow a TV tray type of table on wheels. Have it next to your recliner or bed.
Get a Tiddy Bear or a travel-size pillow for the car to keep the seat belt off your chest. ¤ Tiddy Bears are great! The key is to have two of them – one up high on the shoulder and one under the boobs.
Have a set of clean sheets ready for the day the you return from the hospital.
Move everything you will need during the day to waist level.
Buy paper plates, plastic cups, straws, food in/on smaller and lighter containers. ¤ Yes on the straws, but all the other stuff I didn’t really use.
Prepare and freeze meals ahead of time or have someone as the designated cook while you recover.
Buy or rent a shower chair or have a cooler handy. ¤ I sat on a small cooler.
Get a back brush for showering. ¤ YES!
Place bottles of hand sanitizer everywhere.
Buy a personal digital thermometer if you don’t already have one. Monitor your body temp (keeping infection in mind). ¤ Yup, this is important. Take temp daily.
Things for the nightstand:
- Medications (track when and how much taken) ¤ Set an alarm clock/cell phone to wake up at night and take on a schedule, rather than wait for the pain to hit.
- Gauze, tape, scissors
- Rubber gloves
- Hand sanitizer
- Tissues
- Chapstick
- Snacks
- Water
- Note pad and pen
- Books and magazines
- Tablet/eReader and charger
- Phone and charger
- Camera ¤ This is important. I took photos every single day from multiple angles. They helped me keep track of the necrosis and were my go-to when I thought I developed a seroma.

Other handy items to buy before surgery:

Lanyard or a special bra with drain pockets (insurance may cover) or make your own drain pockets if you have a sewing machine (see vid below) ¤ A lanyard worked well for me.
Button down shirts
Dry shampoo
Alcohol wipes
Non-child-proof medication bottles
Tylenol

For the hospital (if staying overnight):

Button down top
Lanyard/drain pockets
Head band and ties
Toothbrush and paste
Face wipes
Throat lozenges
Chapstick
Eye mask, ear plugs
Back scratcher (meds will make you itchy)
eReader/tablet and charger (check if hospital has wi-fi)
Headphones
Tiddy Bears or small pillow for the seat belt during the ride home

Going under the knife

So what’s actually going to happen? How does this work?

The prophylactic bilateral mastectomy is serious business. The operation can range from four to over 12 hours – depends on what type of mastectomy (skin-sparing, nipple-sparing) and reconstruction (direct, delayed, implant, DIEP, TRAM, other flap, fat transfer) are planned. It requires at least one night’s stay in the hospital and has a lengthy recovery (multiple-week’s-worth, not just a few days). During a mastectomy the surgeon removes all of the breast tissue leaving little or none behind. The breast reconstruction can happen or begin at the same time the breast tissue is removed: the breast surgeon removes the tissue and hands off the scalpel to the plastic surgeon who does his magic.

After consulting with both surgeons, I chose to have a skin-sparing mastectomy and go the two-stage implant route for reconstruction. Sadly (or not – depends on how you look at it) I do not have enough extra tissue and fat to spare for some new boobies. I’m still undecided on whether or not I want to keep my own nipples, but more on that later.

This whole procedure scares the crap out of me. Even though I’m still two months out, I’m already nervous! There are so many things that need to be considered and so many unknowns. A few things are still up for discussion with the surgeons. I have another list going and will be meeting with both of them again to get some more info to help me decide (updated a couple of answers post-appointment).

Do we need to biopsy the sentinel node to see what’s going on there? Original verdict was no, but to be re-discussed with new surgeon (see Speed Bump). The answer is still no.
Should I keep my nipples? Eventually decided that I’m going to keep them.
Do we really need to snip the pec nerves? It is done to create the pocket, but also for optimal projection. If the pec major remains completely intact, this can cause “jumping boob” when you shake hands, reach for things, or even have a conversation, if you talk with your hands.
When do we do insurance pre-authorization? Breast surgeon does it first about a month before surgery. Plastic surgeon submits after that is granted.
How long will I be unable to shower, open my own water bottles, high-five, do the nasty, drive, work, etc.? Timetable for Healing is one of the sections in the Breast Reconstruction Guidebook and details the first four weeks post-mastectomy. You are back to most of your normal routine during week four.

Breast Reconstruction Guidebook Table 14.1

Source: Steligo, Kathy. Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery. Maryland: The Johns Hopkins University Press, 2012. Print, third edition.

Aside from worrying about infections and other surgery complications, the thing that bugs me most is long-term limitations on physical activity. During the procedure, the surgeons snip some of the nerves that are attached to the pectoralis major to create a pocket for the implant. Because of this, the pec major atrophies and loses some of it’s function. The pec minor learns to pick up the slack, but doesn’t fill the shoes. Does this mean that I won’t be able to go rock climbing again? How about wake boarding? Eek! Anyway, another topic to research and discuss.