NOTHING IS NORMAL WITH CANCER

When I was asked to write about my breast cancer story, I was hesitant as my story is pretty normal – diagnosis, surgery, recovery. No major complications or surprises. But then I realized, there is absolutely NOTHING NORMAL about getting breast cancer, and if my story helps just one person get through this, then I’m happy to share.

I was 52 when diagnosed. My mom had breast cancer previously so I was considered high risk. In addition to having a yearly mammogram, I was also having a yearly breast MRI so I was having a mammogram or an MRI every 6 months. It was the MRI that caught it. My cousin had just been diagnosed 6 months earlier (she was 47 years old at the time) and she was very open with me about her journey which included a double mastectomy, chemo, radiation, and reconstruction, so I knew what was coming - and it scared me. How was I going to do this? How was I going to tell my kids? My daughter was in junior high and my son was in high school. How much time would I need to take off from work? Who was going to help me after surgery? How am I going to tell my parents? So many things to do – where do I even start? My husband and I decided to wait and tell the kids (and my parents) until after I had a treatment plan in place. We wanted to have as much information for them as possible. This turned out to be more complicated than I thought. Since my breast cancer was caught early, I was lucky and had options. Lumpectomy with radiation was the easiest option, or mastectomy, single or double, with reconstruction, or go flat. I talked myself into each of these options at some point. You may think you know exactly what you would do if you were ever diagnosed with breast cancer – but you don’t. At this point of my story, I knew I needed help so I reached out to women I knew had been through this. Obviously my cousin was one of the first I reached out to, but I also reached out to women that I hadn’t spoken to in years! It didn’t matter – every single one of them were full of compassion and jumped at the chance to help me. I could hear the pain in their voices – of knowing another person had to go through this – and even bringing back memories of their own stories. I apologized to all of them for asking for advice but they all assured me that it was okay to ask. These ladies spent hours on the phone with me, met me in person for coffee, gave me books to read, and sent me inspirational cards. They even directed me to others that they knew for additional guidance. Soon after, I was getting calls/texts from complete strangers offering advice and sharing their own stories. I was blown away by the openness of these ladies and how willing they were to talk about their breasts with a complete stranger! To hear their personal stories/struggles with how and why they chose the treatment they did, helped me decide what I wanted to do. In the end I decided on a double mastectomy with reconstruction at the same time. Then I was told some bad news – I would have to wait 8 weeks for surgery/reconstruction! I was shocked – how could this be? Why would a cancer patient have to wait 8 weeks for treatment? It’s CANCER! I was assured by my doctor(s) that it would be fine. I again turned to my “girls” to vent – the same ones that helped me make my treatment decision - who were able to help me see that I could either change my treatment plan (go with mastectomy only and do reconstruction later – then I could have surgery in 4 weeks), or use these 8 weeks to do things I wanted or needed to do. I chose to wait the 8 weeks and while I had the time, I went down to UIHC for a second opinion. UIHC completely agreed with my local doctors’ assessment of my breast cancer diagnosis, stage, and treatment options which I was so relieved to hear. I would highly recommend getting a second opinion – if you have the time. I had a double mastectomy and reconstruction on July 23, 2019, almost 3 months after diagnosis. Recovery was hard, but I again had a lot of support. My co-workers arranged for meals for the 4 weeks I was at home recovering. I had visitors to keep my spirits up and a wonderful friend who is a nurse came over to help me with those crazy drains a couple of times. Those same women who were there for me before surgery, were also there checking up on me after surgery. The final pathology report came back showing no lymph node involvement. I did not need chemo or radiation but was prescribed tamoxifen. After 6 weeks on tamoxifen, I developed a blood clot in my right calf and was put on blood thinners for 6 months. After 6 months of blood thinners, I was told I could go back on tamoxifen, but if I did that, I would also have to be on blood thinners as long as I was still on tamoxifen. Or, I could just not continue with tamoxifen, because my recurrence score was very low. This was a scary decision for me, but I chose to stay off the tamoxifen. (I also went back down to UIHC for another second opinion on the tamoxifen/blood thinners issue. Again, they confirmed what my local doctors advised.) I’ve been cancer free now for 4 years. If it comes back, I know that same group of women will help me once again, along with the women in my church’s cancer survivor group, and the amazing women I’ve met through recently joining the Beyond Pink Team. Breast cancer survivors are like energizer bunnies – we just keep going – for ourselves and anyone else diagnosed. There is no stopping us. I started helping others diagnosed as soon as I could. I shared mastectomy shirts, recovery pillows, and anything else I used after surgery with two dear friends diagnosed after me, and with a couple of “friend of friends” and I will continue to help anyone who asks. As I said before, my breast cancer story was pretty typical and could have been so much worse. My advice to anyone is to get screened so it can be caught early and you can have options. Reach out for help, accept help when offered, and then continue to help others as you are able.