Even though I am doing really well, I can’t help but feel some anxiety about the 2-year mark that is coming up. My counselor has banned me from the BC.org discussion boards for the next 2 weeks, to get a break from the information overload and the negative stuff. We lost about 6 active members in the last few weeks, and it’s depressing. Also, someone just diagnosed with liver mets posted some research results that were interesting, but very very discouraging. In this UK study from 2003 that followed about 150 women with liver mets, only 1% made it to the 5-year mark. The average survival for the women that responded favorably to chemo was 14 months. Now this was before Herceptin was being widely used, so my prognosis is better.
I have known from the beginning that 2-3 years is the most likely, reasonable expectation. So as I approach 2 years I can’t help but sometimes think about it and wonder if this is the “last” of everything. Last birthday party? Last Christmas? Now, this is not useful thinking. But it’s there and I have to actively work to move past it and not dwell. But yesterday I was reading a message board thread about stage IV women with liver mets that someone had started in 2009, about side effects from some treatments. It was an interesting and informative thread, but when I clicked on the names I learned that all 9 of the women posting there have died. None of them made it 3 years.
Now, I understand the reaction other people have and I get it when they say “any of us could die tomorrow, we could be in a car accident. No one knows when their time is up.” I get it, I do. But it’s also kind of bullshit. Living with an incurable cancer that you know will cause your death in the next few years at best is just not the same as the average person’s risk of being killed in an accident. The constant treatment and side effects and the loss of options like career and kids and all that– well, it’s just not the same life as the average 36-year-old woman. So when someone tells me “you never know, you could live for years!” I know that they mean well and are trying to be positive, but they are also ignorant and afraid to face the reality. Or talk about it. And that makes me a little crazy.
I don’t want to be a bummer and talk about death all the time. But this is what is real to me. My life is focused on cancer and treatment and doing what I can to maintain a good quality of life each day. Terminal cancer is my reality, just as some of my friends have lives that revolve around their jobs or their kids. It’s what they do every day, it’s what their life is all about right now. I understand that my diagnosis and treatment is uncomfortable for some people. But it’s just as uncomfortable for me to feel like that reality is dismissed by others. My life revolves around cancer, even if I don’t like it.
Infusion is tomorrow and then a PET scan on Thursday. I expect good results from that, so am not anxious. More annoyed that I have to prep for it and spend 3 hours going through the scanning process. Ugh that barium drink is nasty!