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!
Hi Bonnie. Just read your updated blog reports and we are happy to see that you are making steady progress. It is wonderful that you have such support during your recovery. May 2014 be a healthy one for you and your entire family. Sending our love…Reva and Bruce
Reblogged this on Our Hystories and commented:
Although not hysterectomy related, I have noticed how many people who read this blog, are doing so because of a cancer diagnosis. This person writes really well of her experience and has a wealth of information for those who may be experiencing the same diagnosis.
Hi Bonnie, sending you both love, you are an inspiration and I am blessed to call you my friends, xxxxxxxxx
thanks, this really helps me visualize my upcoming surgery. Thanks for the realism and helpful information to help prepare your mind and body for this life changing event.
Brandy, I hope if you’ve had surgery already you are healing well. If you have any questions don’t hesitate to reach out. Sending strength and good thoughts!
I would personally like to thank u Bonnie for your story.it has inspired me to keep fighting.I was diagnosed 9.11.14 with stage 3 great cancer.to my surprise my brca tests were negative ,even after having 3 paternal aunties with the same things. Having 2 pass away and one survive a lumpectomy 10 years ago. I had my double bilateral mastectomy 6.12.15 (one month ago). Today I had to have my expanders removed as I got an infection. Yes, just a minor set back but also an eye opener. I didn’t come home and rest. It’s been challenging for me to just recover.I find myself always wanting to move. But with your story and my sistuation today.I know I can find it on my own best interest to enjoy Netflix! I’m a spa girl and in the last year my life has done a 360. I had pulled out my yoga belt to help with stretching but that was right after surgery. I think I’ll wait a while this time around. I’d like to keep in contact with you. I do,t have face book and just happened to come across your story. God Bless you! May the Lord keep you in the palm of his hand and may you have the most abundant life ! Your friend, jett P
Jett, you have experienced a lot of loss yet you sound really strong and full of zest for life. Amazing how we can be so resilient! Also, I know how hard it is to just be and to just be patient. Healing takes longer than we want but is so important for the long term quality of life. Wishing you the best of healing and strength in your recovery. You’ll get back to your body. Blessings back to you!
Thanks for sharing your experience, in the recovery process myself and I am very thankful to know of your experience. It gives me an assurance that what I am going through is the same as someone else. It also gives me hope for being back to my old self, oh, and maybe I did too much yesterday, because today I’m exhausted.
Hi Kristy, sorry I missed replying sooner. I hope you’re feeling great and your energy is back even more. Be well, Bonnie
Thank you so much for writing about your experience. I am BRCA2 positive. I lost my mom because of breast cancer when she was just 52 after a long battle (her initial diagnosis at 40). I’m currently 35. I am opting for prophylactic double mastectomy and oophorectomy with hysterectomy. As far as I know, I’m not dealing with cancer, which I hope continues to be the case as my pre-surgery MRI, mammogram, and pelvic ultrasounds come in. I have read through your blog (which I stumbled upon via Google search) and can’t thank you enough for the detail. I have a supportive husband, but one who is leaving the research to me and so I’ve felt at a loss for what to expect and how to share it with him when I do encounter information that is relevant. You put your experience in words that I could easily share with him to make him realize that this process, at its best, is not an easy one and cannot be diminished. I think you will help him have a better look at what we are getting ourselves into—as no one can survive this process without support.
A quick question, given your experience, for what timeframe would you say it is realistic for a teacher to return to work after the breast surgery? I work in a small private school and teach kindergarten. We have an active classroom but I have an assistant. I’m concerned that the physical demands of my job (moving to songs, carrying supplies around my classroom, reaching to write on a white board, and even bending over and reaching over tables) may not be feasible activities for me for quite some time. Can you give me any insight into how this surgery may affect my job? I will be asking my doctor these questions when I see her for the first time next week, but I would love to know what you think.
Thank you once again! You are a brave woman!
Hi Stephanie, I’m so glad that my experience has been useful. You really made me feel grateful I was able to share and help someone else. I wish none of us had to go through any of it. For the mastectomy, I took off 4 weeks. I was [also] working at a school and was able to take some time just before and after the winter break which gave me the most time off without impacting my job too much. For the first 4-5 days, you’ll need a lot of help. Changing the drains, taking meds on schedule through the day and night (don’t chase the pain!), moving around, moving from sitting to reclining, getting dressed, showering. You won’t have much arm movement or strength (couldn’t twist/open jars/bottles). You’ll want company when you do take that first walk around the block as you can be unsteady at first.
After surgery, they should give you some home exercises to do start getting your arm movement back once they clear your for doing some of the simple stretching. I had posted a video from Sloan Kettering that was my daily go to. I’d definitely recommend doing some strength training before surgery and eating as much of a clean diet as possible to give your body the best chance for healing. Same for before/after the exchange surgery if you’re doing that separately (around 3 months after).
When I went back to work after the mastectomy, I still couldn’t do any heavy lifting or extended reaching for a few weeks. You want your stitches and the healing to stay as intact as possible. PT was a big help. I also needed a heating pad at points throughout the day for a few weeks to relax my shoulder muscles which were most impacted after.
For the exchange surgery I think I only took off 4 days. For the oophorectomy, I think I took a week.
Feel free to reach out with any other questions! Sending lots of warmth your way and thoughts for as much ease through surgeries as possible! ~ Bonnie
Hey, I looked everywhere or so I thought for information about “us” with the BRCA mutation and couldn’t find anything… I guess I had tor word for worded type of situation. I’m 19 days post op had 4 drains now as of today only have 2, one each side, I could move my arms with pain but definitely my range of motion has been deeply impacted. Pain while better ithan is still an issue and this pain and burning on my “triceps ” inner upper arm, nausea, now I am no bra it hurts when I breath it was too tight. I like to think that I more sensitive than most ppl but right now I’m just worried day to day, dealt with constipation so horrible. I wonder if straining so hard just made all ese hurt more. Thankfully they change meds they kind of the same but somehow that and miralax, life saver!! Now how long the pain lasted after surgery I expect more pain during expansion. Thank you so much I have been taking pictures I’m scared I’m not going to lie, I’m smaller than what I was but im hopeful still and hopeful it don’t hurt as much or as long as this initial surgery.
Caroline, it will get easier. I’m keeping you in my thoughts! Each day, each week I recovered range of motion, I was very committed to simple exercises once allowed. Then physical therapy helped strengthen areas that had been weakened. I remember a burning too now that you mention it. Also, the pain changed, the intensity lessened over time.
As they expand, sometimes the pain only lasted 30 minutes to 2 days and it was mostly mild. I started to feel more normal as the size increased. There was 1 time I felt that chest tightening with the expansion too but it went away pretty quickly.
You’ve got this! Wishing you a healthy recovery. Reach out if any other thoughts/questions. ~ Bonnie
Thank you. I am also BRCA2 positive and had BSO and prepping to have prophylactic double mastectomy with reconstruction on November 28. Reading this is quite helpful.
Joelle, so sorry I missed your comment. I hope at this point you are recovering strength and gaining your range of motion and feeling some sense of peace that this is now 3 months behind you. Sending you continued healing thoughts. ~ Bonnie