Chapter 15: Time for a chemo beanie

My husband set-up a makeshift salon in the kitchen, decanted the wine and put on my favorite band; U2. I felt like I was going to throw-up, but I was also ready to get this over with. I sat in the chair with a giant glass of wine and took a deep breath. He started slow and shaved the first strip of hair right down the middle. Another deep breath and now the tears started to roll down my cheeks. I remember tasting the salt from my tears in a sip of wine. It was a surreal moment and one I will never forget. It was almost that with every strip of hair that was coming off, I was getting closer to the cancer. I felt it was winning. It was just hair, but I knew this would change a lot for me. I was going to “look” sick. I was going to have a constant reminder of this beast that was overtaking my body. After it was all off, I got up and walked to the bathroom to look in the mirror. I braced myself with eyes lowered, gripped my husband’s hand and raised my eyes to the mirror. The face stared back at me with tear stained cheeks and an electric white bald head. After a minute of shock, I started to laugh and said “this is not a cute look.” My husband said it was now his turn…what? He told me now I was going to shave his head and we would do this together.

I would not fight alone.

I know a couple friends who lost their hair from treatment and they were stunning. One in particular could have been a model while bald (you know who you are KBC). Me…not so much. HA! It was not a good look for me and I chose to cover my head with hats, a chemo beanie or scarves at all times. I was not planning to wear a wig. It was just not my thing. I was shocked how COLD I was without hair, mostly at night. There were very few times during the day that I was without a cap on my head. I was cold, but it was also something I could control. Very few people saw me without a cap when I was 100% bald. It was mostly shocking to my Nieces and Nephew when they came that week for a visit. They had only known me with long hair and there was a look of fear on all of their eyes. We talked about it and I asked them if they wanted to see what I looked like. They all nodded yes with wide eyes and I removed my chemo beanie. I was mostly worried about my Nephew who was 9 at the time. I looked him straight in the eye and said “I look really silly, don’t I?” I told him it was OK to laugh and giggle together and a smile spread across his face. He looked at me and said it was still me…just with a naked head 😉

One day I had to go to the phone store, as my phone needed an upgrade. I had not gone very many places 1.) it was winter in Chicago 2.) my immune system was down 3.) twin babies. I walked into the store with my fave chemo beanie and this young guy came up and started helping me. He was young, a hipster and looked at me and said “cool cap man! where did you get it?” I just stared at him and then started to laugh and said proudly “chemo caps dotcom.” I small breeze could have knocked this kid over and he turned beet red. I told him that he made my entire month and that became my VERY favorite beanie. I could totally fit in with the cool hipster kids…cancer and all 🙂

My 3rd chemo session was coming up and with every session, the treatment side effects were harder and lasted longer. I was struggling with my energy, but mostly with my nausea. I would could not keep anything down, including water. There were times I would drink water and it would literally come right back up. So many people kept asking what they could do to help. I had an idea. As I have shared, my Mom died in 1989 from breast cancer, so I had started mammograms at an early age. My older sister had gotten the BRCA test a few year prior to see if she carried the breast cancer gene. She was negative. I was told from a doctor that I did not need to get the test, as my chances were so slim. This was incorrect…I am BRCA 2 positive.

BRCA 1 and BRCA 2 genes produce proteins to help repair DNA that is damaged. These are genes that are inherited from one/both parents. The BRCA gene test looks for changes to those genes and if it is found, there is a strong increased risk of several cancers. Over 45% of people with BRCA2 gene mutation will develop breast cancer. Now what would I have done? Would I have had a prophylactic mastectomy? Would I have gone through IVF? Would we have found the cancer sooner? There is no way to know. What I do know is that knowledge is power. I wanted to let people know about my story. I wanted to share that we need to arm ourselves with more than a mammogram. Women need to have this test! in 2015, many insurance companies were not covering this test, even with family history. So I had an idea. I had been walking in the Susan G. Komen Race For The Cure every year for as long as I could remember. This year…what if we got a small group together and walked with a greater cause. My goal was to raise enough money to cover at least 1 woman without insurance get the BRCA test. We started a team, asked for donations and encouraged people to join us for the walk on Mother’s Day. This took off like something I have never seen in my life. Families, individuals, companies and organizations were donating to “Team Kat” to help us meet and surpass our goal.

We ended up raising over $50,000 for the walk, took first place in fundraising and I was awarded with the New Balance Survivor of the Year award. I was awarded with some fun swag to wear to the race day (shown in pic) and my story would be shared nationally. I was so grateful for every single person that took part in this and through all these donations, we were able to help so many women. These boxing gloves were lent to me from a warrior named Suz who had fought her own cancer battle and I wore them to every single one of my chemo sessions. I remember one of the many notes that Suz sent me during this time. She told me to “keep my head up, keep my fighting spirit strong and that she was praying for the light to keep shining on me through these tough days.” I still say that to other people to this day. I put the boxing gloves on to honor her in the picture and while I felt horrible during this picture, I put on some lipstick, grabbed my boxing gloves and did my best to look strong. I did not feel strong and everyone kept using the words “warrior” and “fighter” and “badass.” I felt like a fraud. I felt weak and sick and scared. I can now look at a picture and it takes me right back to that day, those feeling, that darkness. But I also know that I pushed hard to find a little bit of light and with all of the support I had…I was able to find it. Chemo was not going to beat me. Round 4 coming up.

This post is in memory of sweet Suz. You are missed.

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