Amanda’s Journey

I have Stage IV metastatic breast cancer that is HER2 positive and hormone negative. It is in both breasts, lymph nodes throughout my body, my liver and my spine.  I am still currently doing chemo. I thought I was done with that but my oncologist and I decided to do a few more rounds. Hoping to get to NED! And I will receive targeted therapy via infusion every three weeks for the rest of my life. I remain hopeful because lots of strides are being made with HER2 positive breast cancer.

How I found out:  I was following your (Laura) journey so breast cancer was at the forefront of my mind when I had a pain in my right armpit that just would not go away. After several weeks of dealing with that pain and after finding a lump, I decided to go have a mammogram. The mammogram uncovered what they called “suspicious calcifications” so they did an ultrasound, too. The radiologist told me that very day that he was sure I had DCIS. That same week I was referred to a Surgical Oncologist who biopsied the lymph nodes in my armpit as well as tissue in my right breast. The next week I found out I had at least Stage II breast cancer. Within the next two weeks I had an MRI and a PET scan, had my chemo port put in and had a liver biopsy. I also found out I am hormone negative, HER2 positive. A couple days after I had the liver biopsy it was confirmed that I have Stage IV breast cancer with mets to my lymph nodes, liver and spine. It was a very fast diagnosis.

How I told my loved ones:  Because things were happening so fast my family was on the ride with me. After the mammogram when I was told I likely had DCIS, I immediately called my husband and my mom. Both of my parents as well as my husbands parents were very much involved in the entire diagnosis process from taking me to doctors appointments to staying at our house to help with my kids. I’m so grateful that I had so much support surrounding me because I would not have been able to hold myself up. My family held me up. Telling my kids was challenging more for me than for them. They are both so young that they hardly understand. The know Mama is sick but they don’t understand the magnitude of it all. And I honestly don’t want them to. I don’t want them to be afraid that I might leave them one day. It hurts to even write that. They’re not ready for that. I’m not ready for that.

Steps my doctor took towards treatment:  Because my diagnosis happened so fast I was getting my treatment plan quickly, too. Once they had all of my scan and biopsy results as well as my cancer type, it was go time. The diagnosis was harder than the treatment plan as far as waiting. Once my oncologist had all the information he knew exactly what he wanted to do. My family and I consulted with MD Anderson and toyed with me going there for treatments, but I ultimately decided that I was happy with my current oncologist and that it was better for me to be home. I didn’t want to uproot my kids and I was not about to be away from them not knowing what my life expectancy was.

One thing that surprised me about treatment:  I was taken aback that I would not be having a double mastectomy. I had mentally prepared for that. I actually stood in the mirror and said goodbye to my breasts. I was ready. I was actually looking forward to it. I thought by getting rid of the girls I would be cutting the head off the snake. When I found out that surgery was not something that would be beneficial for me I was actually really upset. We always hear the saying “cut the cancer from your life.” I wanted to literally do that. My best friend explained it to me best; she got this analogy from someone she spoke to. Metastatic breast cancer is like a dandelion that we blow in the wind. When its a perfect ball, cutting the head off means its gone. Done. It can’t go anywhere from there. But, if we blow it first, all the little pieces go everywhere. So, cutting the head off then doesn’t really make a difference. The pieces are already everywhere. So, since my cancer had already spread, having a mastectomy didn’t offer any benefit.

What tips would you give someone just diagnosed:  1)Stay off the internet. Don’t google your statistics. Its scary and its gut-wrenching and it won’t help. And those statistics don’t have to be your statistic. 2)Find somebody who you can relate to to talk to. Whether its a family member or a friend, or even someone you follow on social media. Reach out to somebody who understands what you’re going through. Breast cancer can feel like a very lonely disease and its unlikely that the people surrounding you will truly understand what you’re feeling. But there are people out there who do understand. And I have not come across one person with breast cancer who hasn’t greeted me with open arms. And it has saved me. 3)Don’t stop living your life. Cancer can take over. You will be devastated and sad and that’s ok. But keep doing what makes you happy. Keep living. Its more important now that ever. Your mental health depends on it. You will find your strength.

What tips for chemo:  So many! You (Laura) gave me so many that made my life so much easier as it relates to side effects. So I’d recommend anyone about to start chemo to find somebody who’s done it or currently in it and get all the info you can. I live for Claritin for bone pain (that shit really works) and ice packs for neuropathy!

Tips for emotional/mental part:  Again, don’t stop living your life. It will have to alter, of course, due to treatment, surgery, side effects, etc. But keep doing things that you want to do. Especially when you feel good. Take advantage of those good days and enjoy them. I truly believe that continuing working out and doing date nights and getting together with my friends has helped me stay strong. I decided that the things I enjoy don’t have to become things I did before breast cancer. I’m not giving this disease that power. And also, give yourself a break. You are going to break down. You are going to cry. You are going to get angry. And all of that is ok. It does not make you less strong. In fact, I think being honest about how you’re feeling makes you a warrior.

One thing I wish I’d known:  I wish I’d known that the beginning is not the end. When I was getting diagnosed and going through all of the scans and port surgery and getting my treatment plan, it felt like all of it may be for only a few months of life. It was a dark place. But that’s not the case. Diagnosis is excruciating. But its not the beginning of the end. Its just the beginning of a different life.

My mantra:  I don’t know that I have a mantra, per say. I just have refused to let this cancer define me or take over my life. I’m still me. Cancer is something I have to deal with, not who I am.

Thanks for including me in this! I love it!

Amanda