Olympia Dukakis is an Academy-Award-winning actress, a trained physical therapist and a very caring soul, who watched helplessly as her close friend, Jessica, a formerly vibrant dancer and actress, suffered from excruciating bone pain caused by cancer. Now she’s speaking out to let people with cancer and their loved ones know that there is a new clinical trial studying an investigational drug to combat the devastating effects of metastasis bone pain caused when cancer spreads to the bones. Editor-In-Chief Gary Barg sat down with this truly fearless caregiver who is working to make a difference for those in pain.

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GARY BARG: As someone whose father experienced excruciating bone pain while living with multiple myeloma, I am really grateful for your work with bone pain awareness.  I think it’s hard for family members to truly understand that level of pain. Thankfully, now people living with bone pain can show their loved ones bonepain.com and tell them, “Look, this is what I am talking about.” 
OLYMPIA DUKAKIS: Right. You don’t have to live with it. You can reach out and find other solutions. Maybe there is some pain, but there are also solutions.  I don’t know what kind of solutions my friend Jessica was exploring;  I assume that she and her family did the best they could with what was available at the time. 

GB: What is also nice about the campaign is that now you, as a friend, can actually provide them with information and direction; it is something you can do to help.
OD: I think that today, without being too critical of the hospitals, you really have to take your health into your own hands. Get as much information as you can. People do make mistakes and are overworked; there are a lot of things that can happen when you don’t have access.  I think this is an opportunity to get access to improve the quality of life.

GB: I always say that people aren’t only misinformed, but they are malinformed about clinical trials; in other words, what they think they know is not only the wrong information, but it is also worse than the truth.
OD: True. There is never too much information. There is always some other piece of information somebody has that can help you or your loved ones.

GB: We always say that the caregiver should become a member of the loved one’s care team. Caregivers must be able to provide information to other members of the team and be heard and be respected for it.
OD: I always say that whenever a person gets sick they need advocates because it’s very hard when you are dealing with the fear and the pain, and all the options and all the side effects. So you really need one or even two advocates. My husband has been very ill and I felt frequently that I had to be his advocate, challenging this doctor and that medicine. I felt it was really important because he was overcome and he was frightened. He had a brain aneurism. The person who is ill often can’t think. He or she can’t even figure out what’s the next thing to do for themselves. So somebody has to be around, and I think that caregivers are the ones who can do that. They are probably the ones that will have to make the call.

GB: We call it becoming a Fearless Caregiver.
OD: Fearless is a good word for it. It does feel that way—that you have to be fearless. And you can’t worry about what other people are going to think about you. I had one doctor say to me, “I’m covering for another doctor but he does not have any patients in the hospital right now.” I said, “Oh, really? My husband is in the hospital and he is his patient.” We’re sitting in the hospital, and I am in the hallway trying to cope with the terrible pain my husband is in, and this woman is repeatedly telling me that his doctor doesn’t have any patients in the hospital. After she said, “He does not have any patients” several times, I started to yell at her.   And she said, “Why are you yelling at me? Do you realize you are yelling?” And I said to her “Do you want to know why I am yelling? Because I am frightened for my husband. That’s why. I’m frightened. It’s nothing personal. It has nothing to do with you. It’s my feelings for my husband and the situation he is in. That’s why I’m yelling. I’m trying to get someone to see him in the hospital.”  She thinks she is going to stop me by telling me to get back into control. I’m not shutting up because of that.

GB: And you shouldn’t. You are a Fearless Caregiver.
OD: I am. I understand it. I learned that’s how you have to be. I don’t like pushing my weight around people. I don’t like being put in that position. But at a certain point, you feel like you have to. Who else will take care of my husband, my children and my mother?

GB: Exactly. That’s your role as an advocate. I don’t think that many people know that you might be the only Academy Award winner who was also a physical therapist.
OD: Yes. I was. This was when people were first dealing with polio.

GB: As a health care professional, what advice would you like to share with family caregivers?
OD: The hardest thing to do is acknowledge the sickness and avoid denial. Focus on today rather than on mortality. Figure out what you can do today and do it. You do have a choice regarding where things are going. I think you have to do that and plan.

  

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