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.