Published on February 6, 2020
Patient advocate Elizabeth Dechen shares her story of being diagnosed with chronic lymphocytic leukemia after beating ovarian cancer. Watch as she describes how she moved from feelings of apprehension to feelings of hope, and decided that if she got through cancer once, she could do it again.
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Transcript | Two-Time Cancer Survivor Shares How She Stays Hopeful
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How we live better often involves letting go of our grip just a little bit. Elizabeth, I’m looking at this list in front of me about how you retired in 2011 and had varying cancer diagnosis. You got an awful lot on your plate. How did you get to that moment of, “I can get better”?
Oh, yes. Well, the thing with me too was I had ovarian cancer 10 years before my diagnosis of CLL, and I went through the chemo, six months. There were times that I thought, “I can’t go through it,” but you get through it. My husband kept telling me, “You’ve got to go for another chemo treatment, as sick as you are,” and I did get through it. And then, lo and behold, I go to my hematologist for my checkup to make sure my blood work is okay and I don’t have another ovarian cancer scare, and I find out that my lab work came back and it was not what they expected. And I did further testing and then they found out that now I had CLL.
When they told me I had chronic lymphocytic leukemia, my first question was, “What is it? I never heard of it.” It’s not a common cancer. I mean now, of course, with listening to people and educating myself, but at the time it was like the big C again and I was just—I was shocked. I was just—I thought, “Who gets cancer twice?” But then again, after I went through the initial surprise, shock, and looking online—the Internet, I went online and looked at the internet to try to find out more about what I—what chronic lymphocytic leukemia was like…
…you broke the rules. You went and talked to Dr. Google.
Yes, I did. I mean, I had to find out more about this cancer I never heard about and I know the doc—hematologist—when I went to her, she said, “Oh, get a book on the way out. It’s not the worst kind of cancer you can have.” Well, if you’ve had cancer twice, I don’t care what kind of cancer it is. It’s the C word. It’s cancer. There’s no—it’s a scary feeling. It really is.
So, anyway—so, I did a lot of research and I decided that I was going to go to a specialist, which I did, and then I was going to get a second opinion when I found out that I had to finally go for treatment. And I’m at the point right now where I still go to NIH every three months, but I’m at the point now where I’ve accepted it, I’ve gotten through cancer once, I will get through this again. For some reason, I don’t know why, this was given to me and I just have to accept it and move forward.
And it has made a difference in my life, because I do exercise more. I enjoy things more because you realize life can be short. You’ve got to take those good moments and you’ve got to enjoy them. And so, I hardly ever really think about CLL, except when I go for my every three-month checkup just to make sure that I’m okay. I always get a little nervous before that, before I go up to…
I’m allowed, but I really—I feel good and I feel normal. I think that’s the biggest thing. I wanted to feel normal again and I must say that with ibrutinib (Imbruvica), I do feel normal again.
Reading other patients online. Connecting with them made a big difference. I mean, there were people online, the ACOR group that had CLL and they were living with it, and I think that’s really what helped me get through it was just hearing about other people that had CLL and they were still alive. Some were alive for many, many years because they did not have the acute or the very low dose of CLL or—and I just—the Internet really helped me a lot in speaking to people too. Telling them that I was scared and then people responding to me on the Internet. People I’ve never met.
Going up to NIH, meeting other people in the waiting room with CLL that had been going for many years, and they were still there. And they were still able to talk about their story, and they were still living life as best they could. Was I scared? Absolutely. “Cancer again? No, it can’t be.” Yes, I was very scared, but I think talking to other people and realizing that I had gotten through it before and I can get through it again.