A Conversation with Cary and Ben Jones

Cary and a friend celebrate the opening of her photo exhibit, February 2001 © KUED

Continued...

Q: What were some of the emotional phases you went through after you first heard that Cary's cancer was terminal?

Ben: I'm sure it's different for everybody that goes through it. I think there were some very distinct phases as I think back on it now. My first reaction was action. What is it I can do to try to artificially or otherwise control the situation?

Cary: That's when hospice came in.

Ben: That was the period when we got hospice involved. We were doing things like making out wills, living wills, powers of attorney…we were beating things back and forth to each other. It's been a source of stability and comfort to know that all of those incidentals were taken care of at the very beginning. After all that was done, and everything was in place - some of it perhaps prematurely - we settled into kind of a dark period.

Cary: We talked about what Ben should do after I'm gone. We felt like it was important for us to talk about what he should do after I'm gone so that he would know how I felt about directions he might take. But after a while, we realized that it's so hard to predict how he will feel when that time comes.

Ben: I think it finally came down to having to trust each other, trusting both of us would make good decisions. We've continued to do the best we can and we're are trusting each other that it will work out. So once we let go of that, which was a big relief, we realized that she's probably going to get sick again. We're trying to get out of the death watch mentality now and move into something that's richer, because waiting for death can be a tiresome, boring, trying thing.

Q: I heard that the social worker once told you that when Cary died, the two of you would still be married - that just because your spouse dies, it doesn't mean that your relationship ends. Was that a revelation to you?

Cary with her son, Peter © KUED 2001

Ben: Yeah. It was an incredible revelation to me. Because I was looking at it as this finite barrier. Cary would die and there'd be this unimaginable grief afterward, and then a void. So there would be a noticeable absence. And I think that maybe things don't change all that much. And maybe you are pretty much the same person as you were before. Your feelings and your priorities and Cary's presence are very much every bit as important on the other side as they are now. I think that realization took away the fear, a lot of the fear of what is on the other side of Cary's death.

Cary: It's like it's okay to still be married. Even if we're not physically together.

Q: At some point you had to make the decision that you wouldn't go for any more treatment. How did you make that decision?

Cary: I was not prepared when I was told the cancer had come back. I assumed I would either go back in for surgery or back in for more chemotherapy, which is the route in a lot of cases. But for this type of cancer, the only treatment left was stem cell replacement. I felt like we considered it very seriously, but I honestly could not see myself going through that. I could not see that as part of my life experience and I could not see taking my family through that. I just felt like it was inhumane, that the quality of my life was more important than the maybe the quantity.

It's a tough one, because you are saying this is enough. I'm no longer in a fight; I want to be at peace. I think that peace has bought me a lot of time. I've never really questioned that decision. You think you would, but Ben and I both felt that was not the right decision for me.

Q: You had mentioned that when you first went to the doctor you were naïve and accepted whatever the medical establishment had to say. With everything that you've learned, what advice would you give yourselves if you could go back in time?

Ben: Be careful and go slow. And think for yourself.

Cary: Ask a lot of questions.

Ben: Don't be afraid to ask questions.

Cary: And go to the medical library or the Internet to get as much information as possible. And call people who've gone through it. Getting more voices in when you need to make those tough decisions is helpful. Just don't blindly accept everything that's presented to you.

Q: How did you even know to get on hospice?

Ben: I had heard about hospice at the hospital where Cary had her surgery the first time and I'm not sure that we had ever talked about it prior to that. I remember how, a few days later, we were told that the cancer had returned. I was sitting at the office, stewing about what to, and I picked up the phone and called the director of the IHC hospice group here in town. I just started asking her questions..What do you do? How is your service? What could you do for Cary? And they had two nurses out here the next day, as I recall. They met with us, they interviewed Cary, they took care of contacting her oncologist and getting her certified into the program. It was very easy, painless, non-bureaucratic, and unhassled. It is the most unhassled medical thing that we have ever done.

Cary: They're there to help you. They're there to take hassles away. They know that, by the time you get there, you've been through a lot. You have to be certified that you know the likelihood that you've got a six month window.

Q: What has hospice done for you?

Cary: Hospice has given me the courage to live. The way they've done that is by helping me to understand how pain is managed. I was not afraid necessarily of death itself, but of pain. They have really been able to control my pain and have made it possible for me to have a really good quality of life this last year. I have confidence that they'll be with me through the process of death and that they'll be here with my family. Because they do help you and your family prepare for what death is like. They explain the active stages of dying. And boy, what a gift to give to your family--bringing in those experts. It takes a lot of the fear out of it.

Ben: We're fortunate to be able to participate in it. To have it as a service. It's all been about maintaining a very delicate balance. I think Cary's condition is this delicate balance and things throw it off. Small things can throw it off very easily. Hospice has enabled her to really live much longer than she would have without that care, and they've helped us achieve that balance.

Cary: The nice thing about it is that I'm in control and they're there to help me with whatever I need. They're not there to control anything.

Q: Along with the support of hospice and your family, have your friends been able to help you through this time?

Cary: It's funny because, in the case of some friends of mine who I would consider having been very close who, through no fault of their own or my own, this experience has drawn us apart. Then there are others who, before my illness, I did not see very often and now are essential. And they are people who are very unafraid. They continue to recognize me through it all. And I can't say enough about those friends. But there are not many. So many people are afraid.

The friends who have helped the most are the ones who just keep showing up in my life, the ones who are not afraid. They're not afraid of the ups and downs of illness. They just show up in different ways: on my doorstep with flowers, on my doorstep with gossip, or on my doorstep with a good book to read. It's so simple and so small, it doesn't have to be grand. But it means a lot.

Q: You were telling me a story about how one of your friends gave you a very unusual birthday present last November. It was about the time the doctor's predicted you would be dying.

Cary: Well, I have this great friend who's been with me every step of the way. One day she came over with an envelope: a gift to go and get a reading from a psychic. For me to find out what my future will be. I mean, what's he gonna say to me? "You don't have any life line left?" And I'd never done anything like that, but at this point, I'm pretty open to anything. So she took me to this very interesting, eccentric man. I was thinking, "What is this guy gonna say to me that that will do anything for me?" But he said, "We're looking at death, aren't we?" Right off the bat!

He went on to talk about a lot of things, but the thing that I thought was very moving and very powerful is that he said I think you need to begin to honor death. He said, "It seems to me that you're looking at death completely from the perspective of loss, what you're losing, that this is the most terrible thing that could ever happen to you…all from this one perspective. Think about honoring death." That statement struck me so powerfully. I have been looking at this from a one-dimensional point of view, that it is all about a horrible tragedy, a loss. It was like taking off a pair of glasses and putting on another pair of glasses. It's like all of a sudden I thought maybe I could begin to honor death by living fully, by not being so fearful, by looking death straight in the face, and not running away from it. It really changed my attitude. I began to live.

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