So I’m up here on Whidbey Island with the dogs this week, just relaxing and enjoying the quiet. I’m working on my calendar and trying to make plans for things the next few months. Even if my scans come back in January as poor, I know we’d just be adding the Xeloda (which is an oral chemo). So there’s a pretty good chance that I’ll continue with my infusions-every-three-weeks plan for the next several months. I don’t know how I’ll be feeling, but I do think that I need to be planning things instead of waiting around to see how I feel. It’s too easy to end up staying at home and not doing anything.
I am so lucky to not have to work or take care of anyone but myself. I think all the time about how I’m feeling so great– and I am. But it’s a totally new normal. I feel great as long as I sleep 10+ hours at night and maybe nap during the day. Bringing in the groceries at Whidbey yesterday made me so tired I had to lie down. I walked on the beach with the dogs for 45 minutes and it felt so good, but that’s pretty much all that I will do today. I’m grateful that I don’t have to feel miserable all the time as I try to work or take care of kids. The hours I can be up and doing things, I get to choose fun things. But it’s not like I’m running any marathons over here. And the scary part is this is the easiest treatment I could or will ever have. It’s never getting better than this.
The death of my support group friend and of Elizabeth Edwards has pulled me out of the pocket of denial I’d been hiding in. It’s so easy to think, “Oh, there are new drugs and I’ll do great for a long time.” While that is a lovely thought and would be a welcome miracle, it’s not realistic. I’ve made it for a year. If I make it for another two years, I will have done very well for my diagnosis. I talk about how I’m going to have a big party for my 40th birthday. And maybe I will. But the truth is I don’t really believe I’ll be here that long.
And that’s okay. It really is. I can’t tell you how many people have said “oh don’t think that way!” But really it’s about THEM not wanting to think that way. What people don’t always understand is that I need to recognize the severity of Stage IV cancer. I need to understand that even the new drugs don’t mean there’s a cure. Tykerb+Herceptin together is big news, and those drugs are helping me right now. But the research is exciting because is shows an average of 23 months until death vs. 16 months. This is not a cure.
I need to recognize this because I need to be more deliberate with the choices I make about how to spend my time. I need to not put things off. I need to take trips and see friends. I need to things now, not plan for a year from now. Because things can turn on a dime and in a matter of weeks or months I could be really sick. Elizabeth Edwards looked great in October. In December, she’s dead. And that seems to be the norm with this disease– you do well until you don’t. Which is a blessing in so many ways, but also horribly scary.