I was out, or so I thought. I was out of treatment, my hair was growing back in that crazy curly way that chemo makes it grow. I was back to work and slowly but surely my mind was becoming occupied by thoughts other than breast cancer, treatments, illness and fear.
I was still in a support group but I was thinking of ways to extricate myself from those relationships. I had decided from the beginning that I wasn’t going to let this define me. I would do what needed to be done and then move on, go back to my life and put this behind me.
Then one day I was talking to Liz Szabo, the health reporter at USA Today. It was October so something she had written had caught my attention and while we were chatting she told me, “You should join our #cancerchat on twitter this week. We will be talking about rare forms of cancer.”
I laughed it off at first. I had a twitter account but I wasn’t very active with it. What would I have to contribute, what would I say? I didn’t really have any intention of joining in but as that day rolled around and the appointed time arrived I found myself asking the social media director, “how can I follow this chat?” She hooked me up with tweetchat and before I knew it the chat had begun.
I won’t lie, that chat just flew by. I had a difficult time keeping up and wasn’t sure when I responded if I was too late or if my comments had been noticed. In no time the chat was over and I was a bit energized. I quickly went back through the list of participants and began following a number of them. Three of these twitter aficionados were the founders of their own twitter chat #BCSM (Breast Cancer Social Media). I quickly learned that the three hosted a weekly chat on topics related to breast cancer. I was almost done with my cancer experience but something made me sign-on to the chat the next week.
At the #BCSM chat I met many wonderful women all battling different issues surrounding their breast cancer experience. I was done (wasn’t I?) but continued to be drawn to articles and discussion surrounding cancer and especially metaplastic breast cancer. My new friends were great support but also many of them were a great resource as well. Oncologists, researchers, breast specialists and pathologists were among the group. The information being shared wasn’t just about practical ways to work through cancer and its effects but also blogs about the latest research, theories and drugs being developed. I found my self being drawn to the information that might better explain my own rare cancer and more importantly might hold the answer to a cure for metaplastic cancer.
At just this moment in my life, I got my second diagnosis of metaplastic breast cancer. A new tumor had formed in just a few weeks between the end of my treatment (Sept) and Thanksgiving. My casual curiosity took on a new meaning. I now felt pressed to discover more and understand better. Alas, with such a rare diagnosis, there is little information to be found and what can be found is difficult to understand. I realized then that there is a need for a website where all of the disparate information about MpBC can be brought together and organized in a way that can help a newly diagnosed patient understand this disease. So that is what this is: A site for the newly diagnosed. A place where I hope a metaplastic patient could find the information they seek to help them understand just a little bit better what has happened to them
And who knows, maybe Liz and the ladies of #BCSM will drop by from time to time to remind me how this all got started.