A Previvor’s Story, by Carly Miller (Part 2)

Carly Miller is a BRCA2 previvor living with her husband in Los Angeles. She is a Peer Support Group Leader and Peer Navigator with FORCE. Carly also volunteers for Sharsheret and has been selected to serve on a Patient Advisory Council developing treatment protocol for HBOC patients at Kaiser Permanente. Here is Part 2 of her story. Click here for Part 1.

PART 2

When I awoke in the hospital on January 25, my chest was on fire. I looked over and saw the drugs dripping into my IV, but the pain was still intense. I was in and out of consciousness all night and in the morning, they switched me from IV to oral pain meds so they could send me home. I couldn’t believe these doctors expected this pain to be cured with one pill. Were they serious? I just had my breasts amputated. To put the cherry on the sundae, I was told that I may feel like I have PMS for the next month due to the side effects of anesthesia.

The next ten days were a blur of pain, sleep, tears, and of course, emptying mastectomy drains. My chest burned and throbbed and the meds only took the edge off the pain. During that time, I developed what was deemed a skin blister by the surgeons in the ER. When I followed up with my plastic surgeon a few days later, I was given the news that it would probably take weeks or months to heal. This would inevitably delay filling my expanders and, in turn, the exchange surgery.

I was on a strict timeline. As I mentioned before, I am a swimmer. I specifically did the surgery in January so that I could be back in the pool, fully healed, by summer. I knew I didn’t want to do many fills, so this seemed like a realistic goal and my doctors initially agreed. What I didn’t realize was that my doctors weren’t giving me realistic recovery time estimates and possible complications were barely brushed over during my pre-op appointments.

This skin blister, while minor compared to other complications that can arise, was threatening to ruin my summer. Tending to an open wound twice daily on skin that’s never seen the light of day is not what I’d call fun. And this went on for months. The blister wasn’t painful because I had no feeling in that part of my breast, but it was annoying.

About three weeks after the mastectomy, it seemed that the surgical pain was wearing off. However, it was replaced by the extreme discomfort of the expanders, these metal devices underneath my pectoral muscles stretching out the skin, tissue and muscle to later accommodate the implants. Sheer panic set in when I realized that I would probably feel this discomfort until the expanders were out. And that wouldn’t be for another few months. And if I felt this uncomfortable sitting around the house, how would I feel swimming lap after lap in the pool? More panic. And, of course, depression.

After about three months, I was able to get back in the pool (until my exchange surgery). The blister hadn’t fully healed and I still had what was essentially an open wound. But my plastic surgeon approved 30-40 minutes a day of swimming. After a few weeks, she upped it to an hour. While being back in the water felt wonderful, there was evident discomfort when swimming laps. I told myself it would go away when the expanders came out.

After another few weeks, my doctor determined that the blister was healed adequately enough to do an expansion. I knew almost immediately that I did not want to go any bigger. I had huge breasts (DD) since I was 12 and always felt that if they had to be removed, I would opt for smaller ones. A week later, I told my doctor I was ready to schedule my exchange. At this point, it was early May and I was in a rush. Not only was summer fast approaching, but the expanders were extremely uncomfortable and I simply had enough of them being inside my body. While I knew I would have to take a hiatus from the water again following the exchange, I was anxious to complete the process.

On June 3, 2015, the expanders were exchanged for saline implants. I opted for saline simply for my own safety and peace of mind. I knew that with saline, if there was a rupture, there would be no harmful side effects. When I woke up in the recovery room, there was some pain. But it was overshadowed by the relief I felt having the expanders out of my body. I could tell already that the implants were much more comfortable.

During this surgery, I also had some excess tissue removed from the left side to alleviate discomfort and create symmetry. In the days and weeks that followed, most of my post-surgical pain came from this area. Luckily, my plastic surgeon was able to open parts of the incisions that left the blister undisturbed and no others formed in the aftermath of the second procedure.

Five or six weeks later, I was back in the pool. At first, there was discomfort, just like before. But over time it subsided, just like I hoped it would. It took a few months, but I’m now back to swimming three miles a day. I also work with a trainer and run, which I am able to do now that my breasts aren’t so big. That’s a plus. I’ve found it valuable to look for positives throughout this process, though they may be few and far between.

I do have some contracture on my right side that I treat with massage. At times, it’s uncomfortable and I still can’t sleep on my stomach, my preferred position. I’ve come to realize that it’s nearly impossible to have a procedure like this and experience no discomfort. I wish someone had looked me in the eye and told me that from the beginning. It’s a new normal, and over time my brain continues to adjust.

As I navigated this journey, there were two organizations which were immeasurably helpful for me. FORCE (Facing Our Risk of Cancer Empowered) works to improve the lives of individuals and families affected by hereditary breast, ovarian and related cancers. I am now a peer support group leader for FORCE in Los Angeles. I also provide one-on-one support via FORCE to other women navigating a similar path. In addition, I am a peer supporter with Sharsheret, which supports young Jewish women and families facing hereditary breast and ovarian cancer at every stage. The websites of these organizations (https://www.facingourrisk.org & https://www.sharsheret.org) are excellent resources for anyone facing hereditary breast and ovarian cancer (HBOC).

While my decisions may not seem reasonable to some, I believe they have saved my life. And sharing my experience might help someone else save theirs. I know that if my mother could’ve prevented her own illness, she would have. And I know that if she were still alive today, she would be doing exactly what I am: sharing her story to try and help others.

Carly Miller is a BRCA2 previvor living with her husband in Los Angeles. She is a Peer Support Group Leader and Peer Navigator with FORCE. Carly also volunteers for Sharsheret and has been selected to serve on a Patient Advisory Council developing treatment protocol for HBOC patients at Kaiser Permanente. This was Part 2 of her story. Click here for Part 1.

Carly can be contacted at [email protected].