Surgery & Recovery
The long anticipated main event
Unlike most cancer patients, I had YEARS to think about my mastectomies and reconstructions. I remember my mother's expanders from her unilateral mastectomy in 1983 and how much happier she was in 2010 when she had the prophylactic mastectomy and DIEP flap reconstruction. My sister had complications after her prophylactic mastectomies that required additional hospitalization, IV antibiotics, and generated scar tissue. When I finally made the choice to proceed with a preventive double mastectomy, I scheduled the procedure for six months later. There was nothing rushed about my decision-making or preparation. Additionally, my in-house support group of my sister, mother, and Jessica helped me think through what I should do to prepare myself logistically. My sister and mother were honest and helpful about the emotional ramifications of removing my breasts.
The cancer diagnosis on January 9 was a curveball that derailed my plans for four months. After twelve weeks of chemotherapy and five of 17 immunotherapy infusions, I was CCR, and my surgery was on track. This time, nothing was going to slow us down.
Preparation
I had bought a mastectomy bathrobe with drain holders before January 10, but due to my travel and the crush of the scans, I only planned marginally in January. I had a lot more time before May 4, and I used it to collect suggestions from my family, Sharsheret, and friends to make my recovery as comfortable as possible.
We live in a two-story home, and the DIEP flap is a major abdominal surgery that requires me to remain hunched over for about two weeks after surgery. It was unlikely that I would want to climb stairs in that position right after I came home, so I planned on staying in one of my son's (now) empty rooms. I set up the room in advance with some spares and loose clothing so I could change. A friend offered a collection of wedges to make myself comfortable when I couldn't lay flat. The wedges also created space for the six drains I was always wearing.
Jessica recalled that one of her friends used a recliner to be comfortable sitting after her mastectomy. I don't own a recliner anymore, but Jessica's mother had one her father loved and was willing to lend to me for my recovery. Task Rabbit helped us identify people who could move the recliner two miles from her apartment into my family room. It proved very helpful before I was comfortable getting on and off the couch. Sitting at the angle I needed to hold so I didn't flatten out hurt my coccyx, so I ordered a donut to use on the recliner and sofa. I also used a lap desk to rest my tablet or laptop on my knees or lap to read in bed, on the recliner, or on the couch. Sharon, Jessica's Mom, also lent me a walker to use post-surgery when I had to remain hunched over. The walker helped with balance for the two weeks when I walked like a gorilla.
The biggest post-surgical hassles are drains and pain management.
Drain Management
My surgeons place six drains after this procedure - two on each side of each breast and two at my abdominal scar. I had to secure the drains whenever I moved, and multiple times a day, the drains had to be emptied and their contents measured. The only path to drain removal is reaching a low daily output from the drain. Premature drain removal can lead to hematomas or seromas (fluid buildup) and infections. That can lead to more procedures and surgeries.
My Sharsheret contact, Aimee Sax, offered to send me their mastectomy kit, and I received it before my surgery. It includes a bolster pillow, a seat belt pad, and multiple styles of drain holders. The hospital gave me blue tubing clamps to attach the drains to my clothing. They work, but they are awkward. The hospital also provided a Drainage Bulb Holder Adjustable Belt for JP Drains. Those worked better than clamps but were nowhere as discrete as the belt from Sharsheret. Sharsheret's drain holders were perfect (picture). The shower holder kept the drains comfortably neutral and in place while I washed them. The belt was easier to use than the clamps. I ultimately needed my abdominal drains for four weeks and was able to go out and be social without anyone noticing the drains tucked into their little black pocket.
I exercised agency and control over the surgery by determining how to be comfortable and return to everyday life at home. It gave me satisfaction to identify and set these tools up.
Pain Management
One of my biggest worries about the DIEP flap was that I'd be in extra-abdominal pain due to constipation from the anesthesia and pain medications, in addition to the surgical cuts. I imagined that pain would be very uncomfortable, and I wanted to avoid that discomfort as much as possible. I knew that narcotics weren't very effective for me when I had my breast reduction in October 2022. One of the lessons from my mother and sister was that you have to manage pain before you feel pain, and the only way to do that is to take the pain medication on a schedule with "escalation" options. Mentally, I wanted the opioids to be the escalation option, so I needed to be precise with the acetaminophen and ibuprofen schedule, including the evenings.
My father was the medication manager for my mother, and my brother-in-law did it for my sister. My husband is lovely and supportive, but I didn't think tracking my pain meds and ensuring I took them at precise times plays to his strengths. My knee-jerk reaction was that lots of people have this particular need to take medication on a schedule, and there must be an app for this.
There are. A lot. of apps.
My 25 years in tech taught me how to effectively identify my user requirements for the app I wanted. I needed an app that would calculate 4 and 6 hours from when I noted that I took a medication. I wanted alerts to take the medication. I tried to set up multiple medications and pause them if I wasn't continuing to take them. I wanted the app to be free. I found one called Max that works well.
My breast surgeon likes to sing her patients into anesthesia, and she asked me what song I wanted. I wanted to know if we could duet. We agreed to Don't Stop (Fleetwood Mac). The lyrics for that song always make me feel positive and focused on what's next rather than what's behind me. I thought it was quite suitable for the day when my natural breasts (the killers) leave me, and I can look forward to my new, belly-fat-built breasts.
My surgery would last between 10-14 hours. To prepare, I washed the night before and the day of using a specific antiseptic soap. Dove has nothing to worry about! Once I arrived at pre-op, I was asked to remove all my clothes and use warmed antiseptic wipes all over my body except my face. The wipes start warm, but during the wipe-down, they cool quickly. And then I found myself slightly damp in a cold pre-op room. I changed into the garments and socks the hospital provided and packed all my belongings into a bright yellow bag under my name. The nurse offered a welcome warmed blanket. Then, I wait.
It's semiprivate, so I wasn't going to bother people with phone calls, and Neal sat with me once I was dressed and had answered questions about if I felt safe - which I do. The nurses confirmed my medical history and placed the IV. They cannot leverage Voldeport for this procedure because it's too close to the surgical field. The anesthesiologist prefers a hand IV placement, which is far from my preferred placement, but I can endure for the 30 minutes post IV that I'm awake. My surgeons visited quickly to answer any last questions and assure us that the surgery would go well. UCSF also has a texting system so Neal would get regular updates that he could and did share with family and close friends. Just as they're getting ready to wheel me out, the anesthesiologist pushes a sedative through the IV to calm any nerves. I wasn't particularly nervous. I thought about getting through this and hopefully not being in much pain.
My surgery moved around a lot in the weeks prior as the schedulers slipped me in for a long, major surgery before Dr. Esserman went on Sabbatical on May 6 and Dr. Piper (the fabulous plastic surgeon) left for her Brazilian holiday on May 5. So May 4th was it. Otherwise, I'd have to wait much longer and not have Dr. Esserman as my breast surgeon. The pressure was on me to stay healthy!
Dr. Esserman and I did our duet twice while Neal recorded it for posterity, and then I went to surgery. The next thing I remember is waking up in the ICU, as expected. UCSF has multiple ICUs, and I was in the one used for plastic surgery patients. In the ICU, I had 1:1 nursing, so anything I needed happened quickly. I remember getting Heparin shots and that the monitors beeped all night, keeping me from sleeping.
I was suitably annoyed by the constant beeping - but I wasn't in significant pain. As an experiment, I asked if I could forgo the opioids and try to manage pain through over-the-counter painkillers and perhaps Ativan to sleep if needed. Dr. Esserman loved this idea and directed the nurses to mute the alerts in my room so I could sleep. Dr. Piper had already left for her holiday, so I met some of her fellows on rounds.
One complication was that I did lose a lot of blood during surgery and some of my vital signs showed distress. The team determined I needed an infusion and they infused the blood through my hand IV. Something wasn’t working right because it was very painful and went very slowly. The blood has to be kept cool until infused and we only had 3 hours to get all of it into my body before the blood was no good. I was bruised for a couple of weeks on the thumb-side of my wrist. I wish they would have used Voldemort for that but the ICU nurses are not trained in port placement since they use central lines or other techniques.
During the surgery, the team discovered a large lipoma in my lower right abdomen. To eliminate the possibility that it was cancerous, I raced through the halls the day after surgery for a CT scan. The hospital has two (2!) CT machines - one for adults and one for children. I was going to the children's CT room. There were Disney characters on the machine. When the CT tech asked me to put my hands over my head, I told her my surgeons don't allow that. With some effort, she figured out how to fit my arms next to my body while sliding into the tube. The way I was moved from the gurney to the machine was wild. I was lying on top of an inflatable pad. At the CT machine, they inflate the pad...float me over, and deflate it (still under me). Return to the guerny is the same process.
One of the downsides of scans is that we have all sorts of stuff going on below the surface, and most of it is irrelevant. Because of my family history, any anomaly detected must be thoroughly investigated. Dr. Piper's fellow came to tell me that the lipoma was completely benign AND that I had huge, benign kidney cysts. Huge meant that the cysts were doubling the size of my kidneys. I was advised to make an appointment with a urologist to evaluate them AND a general surgeon to remove the lipoma when I had my revision surgery for the reconstruction.
I really wanted a vacation from doctors and procedures after the mastectomies and reconstruction. Reluctantly, I started working on both recommendations. It was easy to connect with a urologist and a lot more challenging to get a general surgeon because general surgery considers lipomas a dermatology procedure. Mine was too deep for dermatology, but it took about 8 weeks, and Dr. Piper's assistance, to get a general surgeon to examine me.
I returned to the ICU from CT, where I was very well cared for and was approved for an unrestricted diet on my second day. If only the choices were enticing. It's astounding that they only offer 1 salad and 3 boiled vegetables (real food) while providing an abundance of Beyond and Impossible burgers (synthetic food). Luckily, we live near Copenhagen Bakery, and they make an excellent Chinese Chicken Salad that my husband could bring me for an appealing meal. A few friends visited me in the ICU, making time fly. I asked my Mom to come after I was home because I didn't need her while in the hospital.
My doctors thought I might be able to go home on Sunday instead of Monday - skip the general surgery floor. Either they didn't know or forgot to mention that I would need to make the call to leave on Saturday or early Sunday morning else discharge couldn't be processed. I missed the deadline and spent a day and night in the 6th-floor general surgery unit. No more 1:1 nursing, but excellent care. My night nurse pushed me to get myself out of bed unassisted. And the shower was set up for me to use - my exit papers required me to be able to wash myself unassisted. It was another use for a walker or a chair in a stand-up shower because I was still hunched over.
As we left the hospital, I felt relieved. The hardest part of my cancer journey was behind me. The cancer guillotine had fallen, but it only took my breasts, and I was willing to give those up voluntarily. The cancers associated with my BRCA1 genetics were all off the table. I wanted to focus on healing, seeing all my kids, and taking an epic vacation with my husband.
The drains were a drag when I couldn't get all of them out after two weeks. At week 3, my left hip drain became excruciatingly painful. I spoke with the advice nurse repeatedly, and we did a workaround, but it was often breathtakingly painful. At my 4-week post-surgical check, I complained about drain pain. It was still generating output, but the pain was very high. The nurse practitioner examined me and determined that the suture holding my drain in place had slipped INSIDE my wound, and it was rubbing the underside of my skin. With a bunch of lidocaine, she carefully pulled the suture out and provided me with adhesive rings to keep the suture out of my body. I carried that one drain around for 6 weeks - thank you again to Sharsheret for the most inconspicuous drain holder.
By the next week after my surgery, I was driving unassisted and enjoying a multi-generational Mother's Day with my parents, our children, and my sister's family. My post-surgery goal was to be comfortable enough to participate in the brunch. Having a near-term goal to help keep me focused and disciplined throughout my recovery was helpful. Surgery wasn't the end for me; it was a new beginning.