I was diagnosed with advanced Invasive Ductal Carcinoma/Inflammatory Breast Cancer (IDC/IBC) in October 2015, at age 35, while pregnant with my second child. I still tell myself this is just another way that I am extra special, like being left handed or having two different colored eyes. Like so many others, I was thrown into Cancerland by surprise, and after months of denial that it was even possible. I don’t want to be here, but I am stuck, so the least I can do is share my story, my insight, my experience in this dark and challenging place. My account is honest and real and complicated and I hope that it helps you or someone you know.
I live on Orcas Island and receive my treatment at Seattle Cancer Care Alliance, so we spend a lot of time traveling back and forth for my care. Even when not receiving treatment, coordinating treatment, going to and from treatment, I am still in Cancerland, at least in my head. And while it does have some silver linings, like a new community to be a part of, it is not a place you chose to be. It can be overwhelming and depressing, so it is no surprise that there is a limited amount of honest and open talk about it. Like parenthood, the cancer experience can look and feel very different for people, but I think those of us who are going through it are automatically connected despite the shitty circumstances.
As an islander, a woman, a wife, a mother, and a survivor, I have often felt lost. I have felt like I don’t quite fit in and have struggled with finding my place in it all. I have found comfort in learning about the experiences of others, which is easier through the internet than anything else these days. It is hard to utilize physical supports as a parent with young children, especially living in an isolated place. This blog has helped me process my experience, build hope and make connections. As much as I’d like to forget, my rare and aggressive cancer is a part of me, literally. And it took over the life of my whole family for a long while. Since I didn’t have the energy or focus to chat with most people about it, I wrote out regular updates during major treatment to share with family and friends. I will be adding them to the blog in chunks, as well as writing current entries (there is definitely cross-over and repetition) about all sorts of things related to motherhood and life with advanced breast cancer.
Some quick truths. Treatment is determined by your specific diagnosis, circumstances, and pathology and many are deemed safe during (at least) the second and third trimesters of pregnancy. I encourage everyone in Cancerland to get a second or third opinion, and find a doctor you feel comfortable with-talking to, asking questions, hugging. They are your hired expert and advocate through this mess.
*I have included an InflammaStory/diagnosis page and a list of resources, beyond the blog posts. Overview of my treatments on the “About” page, and a link below to more information about Inflammatory Breast Cancer (IBC) www.theibcnetwork.org