One year later…

One year ago, on March 25, 2019, I got the call that I have cancer. There aren’t many calls in life that can change your life so dramatically in an instant, but this was one of them. I went from living a normal happy life one day, to being a cancer patient the next.

Throughout all of my treatments and surgeries, I powered forward, never allowing myself to think about unfavorable outcomes. I took it day by day, treatment by treatment, doctor visit by doctor visit. There were days I cried and days I felt great, but overall I just wanted to check 16 chemo treatments off and get through it all.

Well, here we are exactly one year later and I can happily say that I did check those boxes off, had two surgeries, and am now cancer free. When I look back on the last year, I realize how much I have learned about myself in adversity and that even horrible things like getting breast cancer can have silver linings.

During my time going through it all, many friends reached out about different organizations that I should reach out to. One that caught my eye was 5 Under 40, which was dedicated to providing women under 40 (me) with breast cancer (me) or the BRCA gene (me) with medical, beauty, wellness and educational services. Aside from the organization connecting me with a celebrity makeup artist who taught me how to put eyebrows and eyelashes, I loved the group meetups and talking to other women going through very similar things as me.

Now, one year later, I am proud to say I am Executive Director of 5 Under 40 and am able to take everything I’ve learned and pass it along to other women. My new normal is talking to women daily who need help navigating these new, uncharted waters and helping them in any way we can. From wig shopping, to mental health counseling, I’m happy that I can now help others.

Most importantly, I’m happy for my health and my family. My older son Aidan said to me the other day, “Mommy, are your boo boos on your boobies all better?” and I was so proud to say yes.

I would be remiss if I didn’t mention my husband Matt who has been an incredible rock during all of this, handling everything with amazing balance and knowing what I needed and when I needed it. On our wedding day in his vows, he said that he would be my rock, and like a rock, I might want to throw him sometimes. Well, he was right on with both, but I couldn’t be luckier to have him as my rock. I love you.

I am so grateful for the rest of my family, friends, friends of friends that all reached out and helped me through the last year. I can’t even express how much it all meant and I am beyond thankful to have such amazing people in my life.

1 year down, forever to go. #Shaystrong

Preparing for Reconstruction

It has been a while since my last post, almost 9 weeks, and a lot has happened.

I have continued going to get my “fills” and my breasts have steadily increased in size. Right after each fill, my chest and back feel very tight. It is uncomfortable and makes sleeping at night a challenge, but it feels normal after a day or two. The tissue expanders are extremely stiff, my breasts don’t move at all. It feels like I am wearing a really tight bra that I can’t take off.

In total, I have had 6 fills, totaling about 360ccs (I’m not sure the exact number). When I have my reconstruction surgery, I don’t know exactly what size implants Dr. Choi will put in. They way she explained it to me, she will have 3 different sets of implants to choose from, similar to the size I have now, and will test them out during surgery and choose the ones that she thinks look best. We have discussed the look that I am hoping for and I trust that she will choose the right pair.

It is crazy how cancer can go from completely taking over your calendar, to slowly slipping away. Cancer used to be in control of my schedule. Everything was based around my weekly treatments, shots, appointments and the side effects that would come after. It was consuming. During my treatments, I would meet with my oncologist every week and spend at least one day each week at NYU. Since my mastectomy, I have had one follow-up appointment with my surgeon and oncologist and now will see them every 6 months. I have been seeing my plastic surgeon every week or two but once reconstruction is over, my appointments with her will dwindle as well. It feels like I am slowly gaining control of my calendar and my life.

My reconstruction surgery is one week away and I have mixed feelings about it. On one hand, I am so excited to get this surgery over with, have my expanders out, and be able to put my breast cancer behind me. I am also looking forward to a couple of days resting in bed, binge watching shows that I need to catch up on (Cheer, Peaky Blinders…). On the other hand, it feels like I am taking a step backwards. After my mastectomy, it took weeks for me to get my range-of-motion and strength back. I couldn’t lift my kids, be alone with them, take them to school, etc. for weeks. I have loved feeling back to “normal” and am a little sad to be going back to “recovery mode”. It was extremely difficult for me to accept my physical limitations and ask for help. I have heard that recovery from reconstruction is much easier than from a mastectomy, but until I experience it for myself, I don’t know how I am going to feel.

In the last 9 weeks I have: celebrated a friends wedding, gone on vacation to Aruba, gotten back into Pilates, taken on more of my “mom” roles, supported others through their cancer diagnoses, and accepted a new job (more on that later). I am feeling totally back to normal and it is such a relief to be feeling this way. I am hoping that my surgery next week comes with minimal discomfort and a quick recovery. Wish me luck.

Mastectomy, 3

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.

  1. 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.
  2. 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.
  3. 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.

from breastcancer.org

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.

It’s not always easy.

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. 

Mastectomy, 2

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.

When the fighting is over…

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. 

Breast Cancer Awareness Month

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.

Visit bebracaaware.com for more information