Multiple Myeloma Patient Talks Self-Advocacy

Cindy Chmielewski: When I was newly diagnosed with multiple myeloma, I was brought up in that age of doctor knows best, so I would blindly follow doctor's orders. When I heard that you had to have discussions with your doctor, I didn't quite understand what that meant. My discussions with my doctor revolved around "Oh, what are you doing this weekend?" or "Did you see this movie?" or "How are your grandchildren doing?" The discussions didn't revolve around my diagnosis.

Graphic: Cindy was diagnosed with multiple myeloma in 2008.

Cindy Chmielewski: Just talking to other doctors, there are different points of view. So almost any myeloma doctor you talk to, they go, "If you have ten myeloma doctors in the room, and if you ask a question, you'll get 12 different opinions."

In the beginning, that's something that's foreign to a patient. A patient thinks there's a right way and a wrong way. They don't understand there are varying opinions. So being able to interview and talk to so many doctors, and getting all those different opinions, I could now talk to my myeloma doc and say, "Well, what do you think about this opinion, and why? Well, what do you think about that, and why?" I could probe differently, and try to understand how people think, not only how they, but why they feel that way.

I was diagnosed with myeloma back in 2008. When I was diagnosed, my was very high. It was over six-point whatever. It was very high. Myeloma was in over 99% of my bone marrow. I had compression fractures. I lost three and a half inches in height. It was a pretty scary situation back then. It wasn't picked up very quickly, and I think that two years of going to an orthopedic doctor for back pain really hurt a lot.

I remember in the beginning when I was diagnosed, there was – the big controversy back then was, do you have tandem transplants or just one transplant, and do you do total therapy, or do you do something else? And my doctor was not a tandem transplant doctor, so I didn't even think of asking. I felt like – I didn't even think of engaging in the conversation about why not, and what are – to bring up that controversy. I was like oh, I don't want to bring up this controversy. He's my doctor. Let me respect his opinion, following the doctor's orders, and being a good person.

Now it's like, okay, well, why? You could probe. You could try to get into their minds as to "Well, why do you think this way? Why do you think that way?" So, yeah. Even when I was seeing that orthopedic doctor for those years, he wasn't doing an x-ray or any imaging of my back. In the back of my mind, I thought maybe I should be getting some type of imaging done because this pain isn't going away – I thought that – but I thought it was rude to ask that question. He was the doctor. He was the one who had the degree. He must know what he's doing. If that was necessary, he would be doing it. So that was me, back in 2008.

Then in time, when I was diagnosed, I started reading a whole lot about myeloma and outcomes. And I came across this article that patients who were – they called them "E patients," patients who were electronic patients, who were engaged in their care, tended to have better outcomes. And they had to be educated, though, and that's why they were "E." They were engaged, they were electronic, and they were educated. They were all of these "E" words. I can't remember all of them, right at this point, but I knew that I could educate myself. And then I had to practice being engaged and going to appointments, and asking questions, and it took time. And then in time, I learned that there were a lot of other patients, like me, out there. Who, whatever the doctor told them, that must be best, and that's what they were going to do.

So it was at that point I started sharing my story and hoping that others would realize the importance of becoming an educated, engaged partner in your care. Back then, in 2008, they didn't have these Facebook groups that are popping up all over the place. We participated in things called "listservs." I would hear patients talking to each other on the listserv, and I wouldn't know the answer to those questions about me. So I would start writing questions down, that I was reading other patients asking each other, and then I would force myself to ask my doctor those questions.

And doctors, sometimes, take the clue from you. So if you're there and you're very quiet – their days are very busy – they're just going to give you the information you need. They're going to say, "Do you have any questions?" but very quickly. And if you don't go in really quickly, they're going to be out that door. So I had to learn to say, "I have a few questions. So, do you want me to ask them upfront or at the end of the appointment?" Because if I didn't say that immediately when I came in, I know by the end of the appointment, I would have been so overwhelmed, and I wouldn't have stopped the doctor for questions. So I had a practice saying that upfront.

In the beginning, I really didn't even know how to stay informed about multiple myeloma. I would Google – I wouldn't even know what questions to Google – it was bad. Then I realized "Okay, Cindy. You have to look at the dates of these things that are being published," because dates were important. But then there were a lot of things I wanted to read that were behind closed doors. I wasn't able to read the medical journals. Now I stay up-to-date with the latest and greatest by using Twitter. We are fortunate that in the myeloma community, we have the "med Twitter doctors." They're our superstars in the field. Whenever something new is released, whenever there's a practice-changing article published, they're talking about it on Twitter. So I don't have to have access to those medical journals.

I feel like working side-by-side with my healthcare team when I'm a patient advocate on clinical trials, or on the steering committee, I'm working side-by-side with those doctors. I'm just taking the patient perspective and saying that the patient perspective, where sometimes doctors and other people see things in a different way.