Everyone talks about the physical aspects of the recovery from a double mastectomy but the emotional side effects have been a bigger challenge for me.

The other night I was up late reading in bed (The Last Mrs. Parrish) and heard a loud boom followed by Aidan crying. Matt was asleep, and had been for a while, so I jumped out of bed and started running to the boys’ room. I quickly realized that I wouldn’t be able to do anything once I got to their room (I can’t lift, reach, push or pull anything), so I turned around and punched Matt (I was gentle) to wake him up, and ran back into their room.

Aidan had fallen out of bed and was sitting on the floor crying. I rubbed his back as he cried but it was Matt who ran in behind me, scooped him up and held him in his arms. I watched as Matt consoled him, and finally laid him back down in his bed. I grabbed Aidan’s blanket to try to cover him but couldn’t maneuver it to fully cover him with my limited arm movements. I stepped back and let Matt handle everything. Once Matt got him tucked in, I kissed his head and walked back to my room. Matt got back into bed and quickly fell back asleep. 

As I lay awake in the dark, I cried to myself as I thought about how many times I have soothed Aidan & Cooper in the middle of the night without needing Matt’s help. How many mornings did I give the boys breakfast and get them ready for school by myself, while Matt was traveling for work. Tonight, I couldn’t help Aidan on my own because I can’t lift him up to hold him in my arms. Tomorrow morning, Matt will be the one bringing the boys to school, not me, because I simply can’t do it by myself. 

On one hand, how lucky am I to have Matt as such a supportive partner through my recovery. How lucky are Aidan and Cooper to have Matt as their dad, who loves being able to be there for them in these moments. On the other hand, I can’t help but feel that little pang of guilt and sadness for each event that Matt has to step in for me and I don’t get to be the mom that I want to me, that I used to be. 

Aidan and Cooper have been so gentle around me since I got home from the hospital that it almost breaks my heart. Cooper, who loves to be held, doesn’t even ask me to hold him anymore. Every time he sees me he just looks up at me and asks, “boo boos better?”. Aidan has gotten used to coming home after school to find my bedroom door locked, with me laying in bed on the other side.

I can’t help but question what my role is as a mom if I am not the one to soothe my kids when they are feeling sad, help get them ready for their day, and tuck them in at night. I know that this is temporary and that with each day of recovery I will be able to do more. I just have to give my body the time it needs to heal and be grateful that Aidan and Cooper are surrounded by other caregivers who love them. 

Recovery from surgery is a slow process.

The first few days after getting home from the hospital were challenging. I couldn’t take a shower or get dressed by myself. I needed help to make my morning coffee. I could not help with Aidan and Cooper at all. I spent most of the day laying in bed, watching shows, reading, and really doing nothing. I made an effort to go for a long walk each day, grateful that the weather hasn’t gotten too cold and I could just wear a shawl over my shoulders instead of asking for help putting on a coat.

I had drains coming out of each breast that needed to be emptied in the morning and night. We recorded the amount of fluid on a spreadsheet (I love a good spreadsheet) and with each day, the amount of fluid decreased. The drains were annoying and had to be clipped to my surgical bra. They made it hard to wear anything other than a baggy zip-up sweatshirt or button down shirt. 

On Day 7, I went to my first post-op visit with my breast surgeon. Dr. Axelrod removed my bandages and I was able to see my breasts for the first time post-surgery. I had envisioned a much more mangled, bruised outcome and was pleasantly surprised with what I saw. The incisions were still covered with steri-strips but everything looked very clean.

Dr. Axelrod asked me to lift my arms above my head. I looked at her skeptically, thinking that she was joking. I could barely move my arms at all! I quickly realized that she was serious and slowly began to lift my arms. My right arm was able to go pretty high but I couldn’t lift my left arm above 90 degrees. She explained that once my drains were out, I would have to do some at-home physical therapy exercises to increase my range of motion. 

Dr. Axelrod also shared the great news that the pathology reports from my surgery showed that I am now cancer-free. This was the news that we were holding our breaths for. As I wrote about in a previous post, there were a lot of emotions surrounding this news, but most of all, we were relieved.

The next day (Day 8), I went to see my plastic surgeon. Dr. Choi said that I am healing beautifully and that my drains were ready to come out. Brooke, the nurse practitioner, told me to take a deep breath in and a long exhale as she pulled each drain out. I couldn’t believe how long the tubing was that was coming out. It must have been at least a foot long!

It was a relief to have the drains out. Immediately I could feel a difference- my chest felt less tight. Now that the drains were out, I could start doing the at-home exercises, but Brooke suggested that I wait a couple more weeks before starting actual physical therapy.

At both doctor appointments, Matt and I asked how soon I would be able to travel. A close friend (hi @thewellnecessities) was getting married in Miami only 19 days after my surgery. We were optimistic that we would be able to go to the wedding but waited to make any travel arrangements until with got clearance from my doctors. We were relieved when both doctors said that we could go to Miami for the wedding. They warned that I still should not lift anything and that I should try to take it easy (spoiler alert: Matt did carry all of my bags, but we stayed out dancing until 2am…balance.)

The days leading up to our Miami trip were spent resting. I had lots of visits from friends, pushed myself to attend Aidan’s Halloween parade in the rain, and made a special appearance at trick-or-treating.

Matt and I were both so happy to be able to go to Miami. This trip came at the the perfect time for us to enjoy a getaway and exhale after holding our breath for the last 7 months. We celebrated our good news and the excitement of our friends’ wedding. It was perfect.

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On October 28th, only 7 short months after my diagnosis, my surgeon informed me that the pathology report from my mastectomy shows that I am now cancer free. Great news. Exactly what we had hoped to hear. This battle that I have been fighting is over. 

One friend asked me how I was feeling about being cancer free. I responded honestly, saying, “I have only known that I had cancer for 7 months and I’m still processing that news. When I finally understand how I feel about having cancer I’ll let you know how I feel now that it is gone.” 

It is hard to put down in words exactly how I feel, when truthfully, I don’t really know yet. Of course, I am relieved that the worst is over. Chemotherapy and surgery are behind me, and now I can look ahead to reconstruction and recovery. When I think back over the last 7 months, it almost feels like I am remembering someone else’s memories. That what I experienced couldn’t really have happened to me. Did I really go through chemo? lose my hair? lose my breasts? It still doesn’t feel real.

Another friend gifted me the book, “1001 Ways to Slow Down”. #1 is to unplug. I allowed myself a few podcast/kindle/Netflix free moments this week and during my quiet introspection, I began to wonder if I am the same person who I was 7 months ago. The same wife. Mother. Friend. Do I really hope that I came through this whole experience unscathed and hope to return to life before or do I embrace the ups and downs that cancer brought and seek to rediscover myself now that I am on the other side? OR do I guard myself against overthinking and just let life happen and see what comes?

On top of the extreme relief from hearing that I am cancer-free, there is a new level of fear that I hadn’t let myself feel before. In theory, having cancer is scary, but I never felt scared. When I was in active treatment, receiving my weekly and bi-weekly chemotherapy infusions, and preparing for surgery, I was actively fighting against the cancer cells trying to grow inside my body. My doctors were closely monitoring my progress and from the start, my cancer was responding well to treatment. We were taking action and it was working.

Now that I am “cancer free”, there is nothing that I can do to prevent my cancer from coming back. The fighting is over. Whatever happens from here is beyond my control. I can continue to live a healthy lifestyle, both mentally and physically, but even that does not guarantee that my cancer won’t return. I hate that the fear of recurrence has already started and hope that as time goes on, the fear becomes more muted. 

For now, I will try to keep moving forward, live in the moment, not sweat the small stuff and show appreciation and gratitude.