“I was at work when my doctor called me on my cell phone. I teach Deaf students, and I normally wouldn’t answer the phone at school, but I happened to be on a spare. She told me that she thought I had Waldenstrom’s Macroglobulinemia which is a rare blood cancer, and when I heard that word, it really stopped me in my tracks. You hear the word cancer, and the first thing you think is that you might not live much longer.
I didn’t know what to think, but I knew that I wasn’t going to let it take over my life. I kept working. I kept skiing. At first, I didn’t tell very many people or let people know that anything had changed. I was very reluctant to talk about it because I was still processing it myself. My first grandchild was on the way and I didn’t know whether I would live to see her grow up. That was, I think, the most difficult thing. I know that God has a purpose in everything, but I didn’t know what God’s purpose was in this. I still don’t entirely know.
Remembering the sense of uncertainty after my diagnosis is what motivates me to be involved in support group work. When newly diagnosed patients join, they’re scared. It can be terrifying for them. They don’t know what to expect. But I’ve been through it, and I remember. And when they find out that I’ve had this cancer for 20 years now, and that I’m still pretty much fine, it’s very encouraging for them.
I trust telling my story provides hope for people, and that can be a powerful thing. I know I’ve been very fortunate, and I’m thankful that God has been with me through this whole experience. I’ve had good support and good medical care. My granddaughter is an adult now and I’ve lived to welcome another granddaughter. And with all the research and clinical trials happening, there’s reason to continue to hope.”
Created in collaboration with Patient Voice. See the original post on Facebook here, with all of its comments.