Feeling better every day... most days
Did you really have a double mastectomy if you didn’t have a boob voyage party and post about it on social media?
Right after getting my first drain out
PSA, boob cupcakes are IN
Right after my first baby fill. Since I couldn’t lift shirts on over my head for a couple months, this surgery was a good excuse to get some cute button up pajama sets
it really has
For context on my BRCA1 mutation and decision to have a preventative mastectomy, read my original post here and first recovery update here. For more visual content, see my pinned story on Instagram.
One week turned into two weeks, then one month, then two and three.
I’ve gone back and forth between wanting to talk about my recovery process and wanting to compartmentalize everything as a coping mechanism. I’ve felt mostly open about my experience and have had a lot of great conversations with friends and family over the last couple months, but I also needed some time to process things on my own.
Since my surgery, I’ve had to relearn how to do basic tasks; my physical limits were shifting lines that would jump forward one day and knock me back to earth the next. I distinctly remember when it crystallized—the feeling that my body wasn’t my own. In Week 3, I left the house on my own for the first time to go to a hair consultation. The salon was 0.3 miles away and I decided to walk. I was elated to be doing something by myself, but was running late so I walked quickly. By the time I got to the salon, I was so winded I could hardly stand to check in.
It was one thing to be totally sedentary in the first two weeks post-surgery, but another to feel like I could do seemingly normal activities and be shown by my body—loudly and clearly—that I absolutely could not. I would chop some vegetables for dinner and feel great, and then realize I couldn’t lift the pan into the sink to wash up. As of two weeks ago, I’m allowed to do “anything I feel like I can do” since my nurse said I no longer have any restrictions on movement. And yet, I wake up every morning and stretch my arms out, feeling a sharp tightness as the scar tissue pulls them back.
In Week 4, I tried yoga on a group weekend trip and and quickly realized my arms couldn’t even support downward dog—so I played it safe and spent most of the hour in child’s pose. Nevertheless, I felt thrilled and accomplished to be finally moving after a month of laying on the couch all day. It felt like everything was going well as I completed all the lower body movements… Until I went upstairs to change and realized I was completely stuck in my tight workout top. I had to phone a friend to get me out (thanks Emory!).
It really helped to read stories from other women going through the same thing. I found Instagram community and opened messages from other BRCA+ women who stumbled upon my account. They offered up words of support, or their own stories, commiserating in our shared experience.
In Week 6, I went back to work. In some ways, it felt like I’d never left—picking up my usual daily routines of commuting in, eating breakfast at the cafe, going on coffee runs with my coworkers, and even going to the gym in the evenings.
Although my arms were still pretty weak, I felt ok doing some light cardio, core, lower body, and stretching movements, but it was hard to be patient and let my body rest. When I felt stressed from the recovery process, I didn’t have my usual outlet, and gained some weight that I am still working to lose. A couple years ago, I started lifting and learned how to love everything my body could do. I craved the feeling of accomplishment I got from pushing past my physical limits and watching new muscles form. I savored the feeling of being sore—it felt like validation, and I felt strong. It was hard to let go of that progress, knowing it would take so long to build it back.
One thing I’ve learned to love through this process is that my body is resilient. As I clawed my way back to some semblance of normalcy, I celebrated small milestones—like running my first, heaving, 10 minute mile before work one morning. The first time I went back to the gym, I could feel my muscles remembering everything they could do before, but struggling to actually do any of it. Initially discouraged and frustrated, I told myself that progress comes with time and adjusted my movements the best I could. I am taking baby steps each week back to my normal routine and know I will get there.
The plastic surgeon who placed my expanders and stitched up my incisions during mastectomy supervising my first expansion
During the expansion process, the nurses find my metal expander port with a magnet, then inject a needle through my skin to gradually inflate the expanders with fluid
Right after the appointment in which they told me to prepare for surgery #2
onward & upward (& sometimes backward a little)
During my mastectomy, expanders were placed in my chest. These are empty sacks that would be gradually filled with liquid to stretch my skin in preparation for reconstruction—a surgical procedure in which my expanders are replaced with permanent silicone implants (no date set yet, but aiming for sometime next spring).
Now is the fun part: Rather than having my boobs taken away, we are building new ones.
In Week 5, I had my first expansion appointment to add volume to my expanders. Although some people start sooner, my doctors were concerned about some scabbing—they didn’t want to put more pressure on skin that was still healing.
The saline was injected directly through my skin into a metal port that my doctor located with a magnet. I don’t have feeling there so it didn’t hurt; I just felt a little pressure. I honestly think the process is pretty cool—I literally watched my boobs grow before my eyes—but the pictures do look scary if you forget that I can’t feel the needle.
By the time I went in for my second fill in Week 6, the scabbing on my left breast was finally starting to peel, but things underneath were not healing well. It’s hard to tell in the picture, but there was a fissure about ¼” deep where the skin looked eaten away, down to a translucent and thin-looking layer. Not at all like my right side, which had peeled away in Weeks 3-4 to reveal pink healing skin below.
My nurse took one look at it and told me it did not look great. Basically, a chunk of my skin was dead and would have to be removed immediately. This can happen for different reasons:maybe the left side experienced more trauma from surgery; maybe more vessels were severed which limited blood flow; maybe that side was just different.
The left side has always healed slower—I had more shooting pain there immediately after the surgery, more swelling, more drainage, and more scabbing. It was kind of a bummer that my left side didn’t make it when my right side was doing so well. I asked my nurse whether I could have done anything to prevent it; illogically I thought this was somehow my fault. But the human body is not symmetrical, and she assured me there was nothing I could have controlled.
Jul 2019 / 2 weeks post-mastectomy / 50cc fill
Aug 2019 / 6 weeks post-mastectomy / 50cc fill
Sept 2019 / 8 weeks post-mastectomy / 80cc fill / 1 week post-debridement
Oct 2019 / 3 months post-mastectomy / 400cc fill / 6 weeks post-debridement
After my doctors talked, I was told:
Sometimes the skin can regenerate itself, but they could tell that mine would probably not grow back because it was an open, oozing, wound.
In fact, there was a risk that the damage could spread to surrounding areas, including the nipple itself—aka I could lose my nipple (not what I wanted to hear!!!)
In a worst case scenario, if my expander was damaged (from whatever was eating away at my skin) they’d have to remove my expander, wait for everything to heal, go in for another surgery to put the expander back in, and start everything over again.
All this to say… It was time to get this thing out ASAP.
We scheduled a debridement, which is a fancy medical term for the removal of damaged tissue, for the next week.
The procedure itself wasn’t bad (although my left side definitely looked like Frankenboob for a while). It was more of a mental adjustment going back to work, getting excited for physical progress, and then having the rug slipped out from under my feet—even if just temporarily. I’d planned to have one more recovery period after my reconstruction surgery, but this new period of rest didn’t fit into my plan. I was banned from working out again just after I started, and felt frustrated by having to start back at ground zero.
If there’s one thing I’m learning, it’s that recovery isn’t linear. Some days are great and some days suck. There are days I feel like poking fun at myself and other days I look at my scars in the mirror and wonder how I’ll ever be done with healing and at peace with my body.
when life gives you lemons, surround yourself with incredible people and hold on tight
If there’s another thing I’m learning, it’s that we were not meant to go through these kinds of events alone.
Two weeks before my surgery, my friends threw me a boob voyage party, complete with a pink theme, “pin the boobs on the babe” game, and boob cupcakes. It was a special way to say goodbye to the body I knew and have some fun before the journey ahead.
My best friend Giana woke up at 5AM on a Tuesday to be with me for my second surgery, and kept me company while taking work calls and handling the logistics of her own cross-country move.
I decided my recovery period was a good time to move out of the apartment I’d been living in for three years. Since my arms were still noodles, my friends came over to help me carry furniture and then unpack in my new place (thank you Ryan, Michael, and Ana).
Some of my friends set up a meal train (shout out to Addy, Giana, Blaire, and Katy) and rallied people from my communities at college, work, and church to keep me company and feed me delicious food.
Initially, I felt uncomfortable accepting help, or giving real answers when people asked what they could do for me. But when I was cooped up in the early periods of recovery, I had visitors to look forward to every day. It made a world of difference. I can’t say thank you enough to everyone who cheered me up, fed me, watched trash TV with me, helped with tasks around the house, and warmed my shriveled little heart… It is hard to think of a time when I felt more supported or encouraged by community.
All this to say, some things take the whole village and I have the best one.
Until next time,
Kai
