My doctor told me last Monday, when I went to see him, that I’m bankrupting the hospital. That I’ve been on my drug for so long that he can’t believe it. And I know that he looks at me in awe that I’m still here, that I have such a good quality of life and I believe that I’m still here to give back, to help other people, because I never listened to the doctors. In the back of my mind, about 3 years into my disease, my doctor actually told me one day, and he apologized, he says “I told your husband, in 2003, I gave you 18 months. He says. “I’m embarrassed to say that I was wrong. I shouldn’t have looked at you like a statistic.” And even now 12 years later he looks at me and he can’t figure it out. He doesn’t understand why I’m still here and nobody does.
I’ve described it to people who can’t understand what metastatic disease is. “I’ve got a big bad giant inside of me and he’s sleeping and we have to keep him sleeping.” I said “But he could wake up at any time and you never know.” So there’s that cloud. And the caption that they took from me is that even your husband does not understand what it’s like to live with that constant reminder, that constant blessing and curse at the same time. The blessing because it makes you enjoy every single day. You wake up every day and you give gratitude that you have another day, you enjoy every season because you’re never really sure are you going to see the next season and the sad thing, I suppose, also is that I’ve lost so many of my friends with the disease and whenever I go back to my metastatic group, is once/month, I go back once/month and sometimes, I don’t go anymore for me. I go because I call myself hope in a bottle. And I give hope to the people who are just newly diagnosed, “Look there is a possibility that you can be here 12 years later.” And I suppose I am very grateful and I express it every day that I’m still here.