The truth is, this is a very invasive surgery with an intense recovery. If you are prepared, stay on a schedule, and have a supportive caretaker (or community help), it’s very manageable. I had a prophylactic bilateral (right and left) skin and nipple-sparing mastectomy with immediate reconstruction using tissue expanders (the final implant exchange will be in the spring).
Preparation: I wrote about preparing for surgery here.
2 Days In Hospital: You will likely wake in a recovery area or your hospital room. I only remember waking as I was being wheeled into my private room, seeing my husband Jeffrey exiting the elevator on his way to be with me. Much of it is a fog now.
My chest was encased in a dressing that was a bit binding and I couldn’t initially see the work that was done. It felt like a shelf.
I was weak and my chest area was twinging. I had a pain meds pump that I could use, as often as needed though it controlled the dosing and maybe had a limit of releasing medication every 6 minutes. In addition, various meds were injected into my IV or stomach: other pain meds, antibiotics, muscle relaxers. Nurses or their assistants checked my vitals at least every 4 hours, which didn’t always overlap with the delivery of meds; we sometimes saw them every 2 hours. As each shift changed, we had different pain meds advice. It was a bit confusing and a bit of trial and error.
I was very thirsty and had rigged a water bottle that came with an internal straw with the addition of a crazy straw that had a very skinny width to enable me to drink from the bottle without moving my arm; at this point, my range of motion was highly limited. I was on a catheter, as I didn’t yet have the strength to get out of bed.
I had a very limited appetite and once they started me on solids, I had a hard time eating anything from the hospital. Each taste of Jello, oatmeal, broth, was met with distaste. Until… Jeffrey fed me noodle kugel from a nearby Whole Foods, specially made only during Hannukah. Remarkably, it was made with rice noodles so it met our gluten-free dietary need! This was sweet cinnamon-y comfort food and I ate small bites for every meal.
In bed, I was limited in my mobility. I couldn’t use my arms and had to adjust and scooch my body into position by side-to-side butt and leg maneuvering and relying on my core strength—which was pretty weak at this point.
My brain had a hard time with words, reading, and watching TV. A kind of double vision would happen and I ultimately just enjoyed the quiet.
On the day after surgery we did a walking attempt. I was able to dangle my legs off the side of the bed but nausea prohibited a walk into the hall. Later that day we tried again and I was able to walk just the hall and was brought to a window with a view and you could just see the expansive ocean in the distance. At this point, they removed the catheter and each time I eliminated, we had to report back how much fluid was in the “hat” in the toilet used to collect the urine. I was instructed to drink a lot of water. The next day, I walked a loop around the floor and before we checked out, I was able to walk two loops.
Before we were released, the dressings were removed and the surgeon’s team checked out the bruising, swelling, incisions and drainage before placing me into a front-closure post-mastectomy bra that I would wear 24/7 for weeks until my surgeon said otherwise. This was my first look at my entire chest and I was pretty beaten up with bruising at various stages and colors and swelling. I had done a lot of work in my preparation to set realistic expectations for those first looks and days after surgery, knowing that I would not yet see what would be the best result. While at the same time, reflecting on the beautiful “after” pictures I saw of my surgeon’s handiwork, knowing with confidence that I, too, would be returned to a state of normalcy. I was so afraid of being initially disappointed and I’m glad I had considered the realities. The expanders were filled to 50% capacity which gave me just about the size I was prior (mostly because of the swelling) and I had 1 drain on each side. My chest was constantly hot from the healing and repair. From another previvor, it was recommended that we place non-stick gauze pads over the main surgical incision (for me, this was only at the bottom edge of my breasts) until it was healed so that the bra bottom edge wouldn’t irritate the wound.
I wasn’t sure if I would want to take pictures every day to see progress, and for reference for other future patients that might read this blog. It has been my intention all along to record this process so others could benefit. Apologies, but I just couldn’t bare it. While I’m confident about what will ultimately be a great result, it’s been hard to see how beaten up I look and it’s been emotionally easier to take a step back from that focus and concentrate on healing.
3 Days Out Update from Jeffrey: Bonnie has a bit more range of motion each day and is able to slightly adjust herself. She is walking slowly and we hope to do a walking meditation today after her shower. Yes! She showered today so that was huge for her to wash away the residues of the past 72 hours [in hospital]. And I washed her hair as well. Ah! Bliss. Excuse my emoting. A big weight is lifted as my soul mate has gone through a huge body trauma and is finding her center again. I feel such relief.
The months of preparing definitely paid off. Yoga strength was a big part of helping her rise up on her toes and position herself as needed [onto the bed and couch]. Pre and post operation meditations grounded and calmed her. Her aura enveloped all and she passed on that sense of focus. PT made sure her muscles and tightness were at a minimum and collectively it all merged to a successful outcome.
5 Days Out Update from Bonnie: Best news, pathology came back clear. No cancer cells. Woot! Pain management is priority and the body definitely let’s me know what’s up. Each day a little better. Grateful for the love, light and support you’ve all been sending my way.
12 Days Out Update: I can’t thank my husband enough for his extraordinary, loving care. He has listened carefully to all of the advice we received from my surgeons, BRCA previvors and breast cancer survivors and has diligently made sure I’m comfortable and safe. He has balanced my care while being in the thick of holiday jewelry sales, production and our new I Married Me launch. No easy feat. I’m a very lucky girl!
I also send much gratitude to our community, friends and family who have been so supportive and thoughtful. Healing from a major surgery can be a vulnerable and lonely experience. The outpouring of love has been a significant source of strength and again, I feel so very fortunate.
Special thanks to my dad and little sister for visiting, helping with the recovery and taking me on my first outing.
A few more things we’ve learned along the way:
Medications Schedule: It’s very important to track the times and doses for the various meds throughout the day and night. It’s easy to forget where you are in the schedule or how you may have changed dosing from day to day; the days can easily meld together. We have set multiple alarms on our phones to wake us for the pain med intervals in the night and remind us in the day. Especially when you start weaning off pain meds, you want to track the reactions your body is experiencing to determine if you’re ready. There is no formula. It’s about your individual needs and how your body responds. We tried putting more time in between pain meds, which worked for a while. We have recently reduced again how many milligrams I’m taking. Certain meds are only “as-needed” and you may not find a routine for those, but literally, taking only when you experience symptoms or pain.
Drain Schedule and Management: Your surgeon will likely give you a table to track your drain fluid 2x/day. Mark your measuring vials with R and L to ensure you are tracking each side accurately. The drains won’t be removed until they are below a level recommended by your surgeon. In my case, it’s less than 30cc/day.
Be sure you are appropriately milking the pipe to force any fluids or material left in the pipe to collect into the bulb. It can inhibit drainage otherwise and even can get suctioned back up. The milking entails holding the top end near the wound exit and not tugging the pipe (you don’t want to pull out the pipe or the stitches) and squeezing the pipe, flattening it as you go down, moving liquid toward the bulb. Once you have expelled the fluid, you always want to squeeze the air out of the bulb to create suction for the next time.
We are using extra large safety pins and pinned a set on the drains, a set on the bra and a set on string to use when showering. This way, when dressed, you attach the drain pins to the bra pins and it’s super easy and no chance of making an unintentional prick. When showering, you place the string around your neck then attach the drains pins to each side of the string pins.
Movement Restrictions: You have just had all breast tissue surgically removed and new breasts created using a tissue expander (the temporary deflated implant), your own pec muscles to cover the upper half of the implant and with the attachment of Alloderm to both cover the lower part of the implant as well as provide support to the lower breast. Your arm movements are required to be limited to nothing above the shoulder level and carrying nothing more than 5 pounds. This is to help the healing process, prevent sutures from being pulled and to allow the breasts to drain fluid.
If you are too active in those early days, you will continue to drain fluid. While draining is a necessary part of the healing, not abiding by the restrictions can result in drains being in longer than necessary—the activity might cause micro tears which means you are not repairing. So while it is tempting to do more as you feel able, practice being comfortable in the stillness. Eg don’t pull pants on yourself, or move heavy blankets, don’t reach for pillows to readjust, wash or help in kitchen. You also want to just be slow in your movements as well as your caretakers’ movements and communicate (coming behind you, taking the shower head out of your hand, etc.).
That said, brief walks are a kind of soul nourishment that in the especially lovely SoCal weather we’ve been having have been a total treat.
Dietary Recommendations: I went off caffeine approximately 3 weeks prior to surgery in order to have optimum blood flow and the surgeon recommended I stay off caffeine during the recovery. As well, he suggested that I eat a bit more protein each day to help with the repair. My appetite started small and I was eating more frequent very small meals in the day. As it has increased, I’m eating a bit more normally, fewer times per day. We again had delivery from Havas Kitchen, a home food delivery company that uses local and organic ingredients, cooking in a Mediterranean style with a California twist. We’ve also been drinking cold pressed juices daily for the added oxygenation and nutrients. Thank you friends and Dad for keeping us nourished!
Constipation: As I learned from my BSO surgery in August, constipation goes hand-in-hand with anesthesia and pain meds. Stay on a regular schedule of Colace, add Miralax in the evening if you need more of a boost and enjoy snacking daily on prunes. (Must give a shout out to CP who made me the most delicious stewed fruits of prunes, apricots and figs that has been a delightful way to speed up my digestive system!) You may find yourself constantly bloated and that may last until sometime after you’re off pain meds and your body finally readjusts.
Sleeping: We bought 2 king size extra pillows to prop me up in bed and on the couch in a reclined position. This has been pretty comfortable with some micro adjustments during the day or night, adding other pillows at my back or neck, under my legs to prop my heels up (repeated touching of the heels to the bed or couch has caused a nerve irritation), using the two breast comfort pillows we bought both at my arms or as extra neck or back support. I can’t quite resolve the bum and tailbone aches… I find I’m up a few times in the night beyond taking the scheduled meds. This isn’t due to pain but maybe some slight discomforts (heels, bum, tailbone) and an awakeness that might be attributed to the meds. I then need 1-2 naps each morning a few hours after waking.
Showering: We only have an overhead shower; we do not have a hand held shower attachment. Rather than installing a whole new system, Jeff located a non-permanent hand held shower unit that attaches to the faucet. This is not a regularly carried item and he had to make a few stops at various hardware stores before he found this unit at Home Depot. We also brought a stool into the shower for me to sit on until I was able to stand; the stool is also handy for when you get out of the shower to sit and dry off with stability. It’s important that your caretaker support you at the hips and not hands, arms or shoulders—you don’t want to be in situation where there could be any tugging which would impact sutures or extend the chest/pec muscles.
Entertainment: The brain fog continues. I’m slower, have a hard time stringing words and sentences together, find it difficult to read. I could barely be on the computer. Thank you Netflix for being my buddy with a bevy of shows to distract and entertain me. I have binged on Orange is the New Black and Scandal. I have started an audio book—a fabulous gift whereby I can sit in the garden or in the house and listen. And I’m slowly reconnecting on Facebook and now, the blog.
Flowers: Oh the beauty of nature with its vibrant colors and scents. And oh the headaches and sinus pressure from the build up of those vibrant scents. You may not even realize where your head pain is originating and if you received a lot of flowers during your recovery, you might try placing them far enough away that they don’t affect you.
What’s on the horizon?
I had my first follow up with my plastic surgeon on Monday and as I was still draining higher volumes, they scheduled a tentative appointment for drain removal on Friday. I will call them with the past few days’ results and hopefully it will be a drain-free weekend. Today, I visited my oncologist/breast surgeon for a follow up and she was very pleased with my recovery thus far and I won’t see her again for 3 months. If I continue healing as I have, once the drains are out, I will likely begin the expander fills early January. We don’t expect more than a few fills to get me back to my size. Next, I will heal for 3 months before I have the final implant exchange surgery where the expanders are removed and the appropriate sized silicone implant inserted into the new envelope created by the first surgery.
Receiving the reports in my hands today that the results of all of my breast tissue biopsies were negative was another confirmation that I can release myself of the fear of breast cancer. With the BSO also behind me, there’s a knowing that my life will be that much more free with less doctor visits and diagnostic tests. It still feels a bit surreal at this point. I am left with ongoing surveillance for melanoma but I know that as long as I am vigilant and aware of my skin conditions and changes, we can catch that disease early. My mantra of protect (limited sun exposure, chemical free sunscreen and protective hats, sunglasses and clothing) and detect (know the ABCDE’s of checking your skin for abnormalities) lives on.
Today we also received news that my dad’s latest PET scans showed no cancer and because this is the second time this year with no new cancers, he can begin getting scans only 1x/year.
This string of good news is a relief!