After getting back from Miami, we started the next phase of my treatment journey – reconstruction.
I met with Dr. Choi and Brooke on Tuesday afternoon (Day 22). They were very pleased with how I was healing and said that I was ready to start “filling”.
As part of my mastectomy, after all of my breast tissue was removed by Dr. Axelrod, Dr. Choi placed a tissue expander in each breast. The tissue expanders are basically like temporary empty breast implants that will gradually get filled up with saline until they are eventually exchanged for a real breast implant.
Some people decide to go direct to implant (immediate reconstruction), and avoid having a second surgery to exchange the expanders for implants, but I think there are some benefits to doing it this way. First, gradually filling the expanders allows my skin to stretch slowly instead of being shocked by a full implant. Second, I don’t know exactly how big I want my implants to be and the process of filling up the expanders allows me to see my breasts at different stages as they grow.
There are a few downsides to delayed reconstruction.
This process takes longer. My exchange surgery is not until the end of January and I will have my expanders in until then. If I had immediate reconstruction, I would already have my implants.
Tissue expanders are uncomfortable. They don’t look or feel like real boobs or implants. They poke in spots, are really hard, and my chest feels really tight, especially after a fill. They aren’t evenly placed and look lopsided. All of this is normal and just part of the process.
I have to have another surgery, which means another recovery period.
After weighing the pros and cons, my doctors and I felt that delayed reconstruction was the right choice.
So, during today’s appointment, I experienced my first “baby fill”. A full “inflation” is 60 ccs in each breast and today I got 30 ccs in each. The way that it works is that Brooke held this magnet device over my breast until it indicated that she found the “port” of the expander. Then, she poked a needle into the port and slowly pushed a syringe of saline into the expander. It is not painful as it is happening (I have no feeling in my breasts), but afterwards I could immediately feel a tightness in my chest. The tightness lasted for about two days. It was more uncomfortable at night and made sleep a bit challenging, but it went away.
Getting my first fill was exciting. After having to go through chemotherapy and surgery, we are finally at the fun part! Though this isn’t the route I had anticipated for getting new boobs, getting to this stage means that the worst is over. The reconstruction phase is all about aesthetics and getting back to feeling good in my own skin. Aside from breast reconstruction, my hair is growing back, my energy is coming back, and I am starting to feel like myself again.
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.
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.
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.
Well… Breast Cancer Awareness month is over. I have always noticed the abundance of pink in October, but this was my first October as a woman with breast cancer. Many of my friends and family have asked me how I felt this month, and to be honest, I still don’t really know. But, I have taken this month to really think about “awareness” and what all of this pink really means.
Until this year, I was naive to the wide range of feelings that many people experience during this month. I never thought that increasing awareness and raising funds for an important cause could have a downside, but after learning about the misappropriated funds of large charities, uneven awareness for different cancers, and the emotional burden that many with breast cancer feel during this month, I am starting to understand why some aren’t super supportive when October rolls around. Since my diagnosis in March, friends and family have asked what they can do to raise awareness. While awareness is important, action is imperative. It is crucial that you take action and be proactive about your health. Talk to your gynecologist about early mammograms and genetic testing. Ask if you can be tested for any BRCA mutation. Knowledge is power.
1 in 8 women will be diagnosed with breast cancer in her lifetime.
If you have a BRCA mutation your chances of being diagnosed with breast cancer by the age of 80 is higher than 70%!
I am forever grateful to my gynecologist who encouraged me to do genetic testing, I only wish that I had done it sooner. I did not even know that I was at risk of having a BRCA gene mutation was until I found out that I already had breast cancer. If I had known sooner, I could have had a preventative surgery and maybe never had to deal with cancer at all. If I had known. Well, now I’m telling you.
So, if you are reading this, November is here. Another October has come and gone. The pink ribbons are packed up and put away, but the risk of breast cancer is still very real. There is so much that we can do to stay in control of our own health, but is it up to us to continue to make people aware of the risk of breast cancer and encourage everyone to take action.
The days leading up to my mastectomy were filled with lots preparation and anxiety. It felt like the final weeks of pregnancy where the nesting takes over and you want everything to be perfect for the new baby’s arrival, although for me, there is no squishy newborn at the end of the tunnel. I made meal-plans for Aidan and Cooper, complete with diagrams for Aidan’s “What Aidan Ate” lunch boxes, cleaned and organized drawers that have been ignored for months, laid out outfits for A & C, packed a hospital bag for me and Matthew, making sure that everything was “ready”.
The anxiety that I was feeling wasn’t about me, the physical pain I was about to experience or the loss of two pretty important body parts. It was more about what recovery would look like and how my household would run without me, the self-designated CEO of Angrist, Inc at the helm. I have complete faith in my amazing husband, but if you ask him to go find the boys’ socks, it may take him a long time to return. But, between Matt, all of the grandparents, and my amazing nanny, I had to believe that I was leaving the boys in capable hands.
Monday, October 21, Surgery Day
On Monday morning, Matt and I casually strolled up to NYU for 7:30am registration. Next, I had an 8am pre-surgery appointment with nuclear medicine. Throughout my treatment, my doctors were confident that the cancer had not spread to my lymph nodes, but we had no confirmation. During this appointment, the radiologist injected a radioactive dye next to my left nipple (yeah, it stung) in order to photograph the path that the dye moved through my breast until it got to my lymph nodes. It was really cool to watch on the screen as the dye moved through my body until it lit up when it hit the first node. This process identified the sentinel node, the first lymph node that would be affected by cancer.
During my mastectomy, my surgeon would remove the sentinel node and check for cancer in real-time. If there is no indication of cancer in the sentinel node, then we can be sure that the cancer did not spread to my lymph nodes. If there is evidence of cancer in the sentinel node, the surgeon would remove the next nodes along the path until there is no evidence of cancer – fascinating stuff.
After the lymph node mapping was complete, I went up to the surgical floor to wait for my surgeons. I was brought into a pre-op waiting room to change into my surgical gown, brush my teeth (yup), sign consent forms and wait. I met with both my breast and plastic surgeons, they marked and signed my chest and then I said goodbye to Matt and my parents and walked into the operating room.
The next thing I knew, I was waking up in the recovery room. I felt a heaviness and tightness in my chest but I wasn’t in any extraordinary pain. My arms felt very stiff at my sides. I could bend my arms at the elbow but could not lift my upper arms off of the bed. While waiting in recovery, my surgeons came in and shared the good news that everything went well and there was no evidence of cancer in my lymph nodes. Matt and I waited in the recovery room for a long time before being moved into my real hospital room.
Once I (finally) got wheeled to my hospital room, I had to stand up to walk from the recovery bed to the hospital bed. After my two c-sections, standing up for the first time was the hardest part, so I was afraid for this moment. I needed help from Matthew and the nurses to push my back forward as I swung my legs over the side of the bed. I sat on the side of the bed for a few minutes to catch my breath as I started to feel a bit faint. Finally, with support, I took the few steps to my bed. I needed even more help to sit on the hospital bed and scoot to lean back to a comfortable position.
The physical side effects of this surgery are almost the opposite of my c-sections. During my c-sections, my lower stomach was cut, basically destroying my core and abs, causing me to rely on my upper body strength to move around. Once I was able to walk, I could use my arms to balance and when I was sitting down, I could use my arms to maneuver my body until I got comfortable. With my mastectomy, I cannot rely on my upper body strength at all. My chest and arm muscles are basically useless. I basically have to pretend that my arms don’t exist as I scoot around on my hips. Getting comfortable in a hospital bed was NOT easy. The biggest challenge is trying to sit up after laying down.
That night in the hospital, Matt and I had Vezzo pizza for dinner. I was happy to have my full appetite back but Matt had to feed me each bite as I could not bring my hands to my mouth on my own. True love.
Once we got ready to go to sleep, I had a hard time staying in a comfortable position. I had to sleep on my back, in an elevated position but I kept sliding down in the bed and wasn’t able to scoot myself back up. I kept having to call for the nurse to help me get comfortable and always needed someone to help me get out of bed and come with me when I needed to use the bathroom. It was a long night.
Tuesday, October 22nd, Post-Op Day 1
Despite not getting a great night sleep, I actually woke feeling pretty rested. We spent a relaxing day in the hospital with a few visits from friends and family. Matt and I took walks around the hospital floor and didn’t really do much else. He worked and I laid in bed.
Standard protocol for this surgery is to only spend one night in the hospital, which means that we would have gone home today. This boggles my mind as I was in no state to go home. I was still feeling very uncomfortable and needed a lot of support to move around. Having the doctors constantly checking to make sure that I was healing correctly was comforting. If I had gone home after just one night, I would definitely have felt more scared and anxious. Because of Aidan and Cooper, I was adamant from the start that I wanted to spend two nights in the hospital. I wanted that extra night in the hospital to recover a bit more before returning home to two rambunctious toddlers. The extra night in the hospital was very very necessary.
Wednesday, October 23rd, Post-Op Day 2
We woke up in the hospital and gathered up our things to get ready to go home. I was discharged, we took an Uber and got settled in at home. Immediately, it felt harder being at home than being in the hospital. In the hospital, I was isolated from real life and could just rest in bed without thinking about what was going on outside of the NYU walls. There were nurses ready and willing to help me with whatever I needed and I only had to worry about myself. At home, I spent the rest of the afternoon laying in bed, but it was hard knowing that A & C were playing in the other room and I couldn’t be there playing with them. Matt and my mom were there to help me, but I wanted them to focus their energy on the boys. I still couldn’t get in and out of bed by myself so I was feeling very dependent.
Thursday, October 24th, Post-Op Day 3
Today I was determined to go for a walk. After my mom brought A & C to school, she helped me get out of bed and get dressed and we went for a walk outside. We got an iced coffee, sat outside for a few minutes, and then walked home. The whole outing took less than 30 minutes but it felt really nice to do something so normal.
Friday, October 25th, Post-Op Day 4
It has been 4 days since my surgery and already I am slowly starting to feel back to normal. I still have many physical limitations, but as each day passes I am able to do a little bit more. Today, I got out of bed by myself for the first time which is HUGE win. Now I feel comfortable to be left alone at home and know that I can start to take care of myself.
I am not a fussy person. I don’t usually buy into all of the things that you “need” to recover from surgery. When I went to the hospital to have Aidan and Cooper my hospital bag was pretty empty, and this surgery was no different BUT, there are a couple of items that have made recovery from this surgery more comfortable.
Button-Front Pajamas: Wearing a hospital gown is NOT pleasant and it is the quickest way to remind you that you are in a hospital. Bringing my own pajamas made me feel much more cozy, but it was still important for the doctors and nurses to have quick and easy access to my chest. Soft, button-front pajamas were the solution. Even at home, I still only wear button and zipper front tops as they are the easiest to put on and allow me to get to my chest. Linked here and here.
Wedge Pillow: After surgery, you have to sleep on your back, especially while the drains are in. Laying flat is not only uncomfortable, but much harder to maneuver from. The beds in the hospital can be lifted to find a comfortable position, but at home, the wedge pillow allows you to stay elevated and lay more comfortably.
Arm Pillows: While laying in bed, it would hurt when my arms were laying flat on the bed. Having a pillow to prop under each arm eliminated some of the pressure on my armpits.
Neck Pillow: While laying on the wedge pillow, the neck pillow allowed my neck to be elevated enough so that I did not have to put any strain on my chest muscles.
Cleansing Wipes & Loofah on a Stick: While my drains are in, I cannot take a full shower. I can take a sponge bath, but my range of motion is extremely limited. I can barely reach my arms up to scratch an itch on my face. This loofah helps me clean any hard-to-reach spots. I also use these body wipes and face wipes to help me stay as clean as possible.