A Conversation with Karen Cook

Q: We're here celebrating James' second birthday. Has your diagnosis with cancer made you look at events differently?

Karen: Well, before I was diagnosed with cancer I just kind of took things for granted, parties, holidays, whatever and since the diagnosis it's like my eyes have opened up in a different way because the events are much more important. So I want to spend as much time as I can being a part of it and planing and just being with my kids and my family and neighbors and such. To me, he won't remember this birthday, but to me it's like a big occasion, because right now according to the doctors I'm living on borrowed time. So that makes it very special to me because I can be a part of this and we'll have this on videotape so he can look back and see Mom and how we used to interact and play when he was a little kid. So it's important to do as much as I can with my kids and appreciate them and let them know how important life is. And hopefully my enthusiasm will rub off on them and they'll be excited about life and not take things or people for granted. Sometimes you're invited to a family party and it's like, oh, I don't feel like going...and then you don't go and then you miss out. You hear about the stories later and then you feel bad. But hopefully through my example they'll see how important it is to go to these things and parties and they can pass that on to their kids too, if they grow up to have kids (laughs). It's a hard thing for me to think of because I might not get to see my grandkids..well, we know I probably won't but..there's that chance of a miracle happening, you just don't know.

Q: Do you hang onto the hope that there might be a miracle?

Karen: I do..every day. I believe in God and I think how powerful he is and he can change anything he wants. And I can do so much myself...with positive thinking and mental preparedness. I think you have more control over how long you're here than most people think you can. Cause I've met people at the oncologist's office and they think they only have a few months left and they look awful, they're sad and they're not living. And I don't have the strength I used to. Two weeks ago I was in the hospital, but I don't let it get me down. I don't let it seem like that's death, that I'm dying...it's just like I'm sick. So I'm living in denial and not in a real reality. I mean I know it's there, I know it's inevitable. It's going to happen to everybody. I know I have cancer, and I almost feel fortunate I do, because then I can do these things and be with my family and my friends.

Q: Are you afraid of dying?

Karen: My belief helps. I know that we'll all be together forever after this life, so I'm comforted by that...that's my strongest comfort zone I go to when I'm sad or scared. Just that this isn't the end of existence and when I die I'm going to see people I haven't seen for a long time, my grandmas and grandpa, my nephew and cousins. And so I feel calm knowing that it's not going to be a scary thing, that they're there for me and they love me and I love them so life's wonderful, at least the afterlife...to me anyway I know a lot of people don't feel that way. But I also wonder, what's it like to die? How will I know if I'm dying? You know, is there going to be some kind of...will I feel different...will it be like in the movies where you're looking down and there's your body..some kind of spirit thing. I don't know ‘cause I don't know anybody that died to ask them the question (laughs). So it kind of scares me, that part of it...how does it end and start...but it doesn't scare me so much that I dwell on it all the time or that it's a problem.

The first year after my diagnosis I felt, I don't know if angry is the word, I felt cheated, I felt betrayed. I always took good care of my body, I always went to the doctor regularly and tried to eat right and exercise right so that was hard. But I never felt angry about death. Because of my belief. We all have to go sometime, we just don't know when. It's not our decision. But I was mostly scared who was going to take care of my kids. Who was going to feed them and dress them. But in the last few months I see everybody pulling through on those days that I'm sick and I can't do anything. I see that they are being taken care of, that they're clean and they're fed and they're loved and they're still laughing and enjoying life even though I can't do all the little Mom things for them all the time. I feel much better, I feel like I could die and die more peacefully and not be upset and worried about them. I used to make the beds and start crying, who's going to make the beds or do the dishes and cry, "Who's going to do the dishes?" But I don't do that any more. Everybody's been helping me out and they've been so wonderful and I feel very calm and at peace.

Q: Describe how hospice has effected your attitude about death.

Karen: I've talked to several people who had their mother or grandma hooked up with hospice and I've heard really sad stories. It makes me sad to think that the family was having such a bad experience. Because we've been having such a great experience. This is someone you're inviting into your home at the most personal time in someone's life and they're seeing you, not at your best, you're very sad and ill. I just couldn't imagine being hooked up with a bad hospice program. I feel very fortunate, very fortunate. It's almost like I don't want to die now because I just want to keep hanging out with them (laughs). Let's go on vacation together, let's go out to dinner.

My hospice nurse has been so wonderful. I mean, she's just taught me so much and I've grown so much from what she's told me and the things we've discussed and talked about. Things would be a lot different if I didn't have her, a lot different. I don't think I would be as calm or accepting. I really don't. Kyle loves Sue Ann. It's like she's part of our family...it's just like having a big sister. I know it's her job, but she makes it seem like it's not a job, that she just loves what's she's doing and she just loves me. It's a nice feeling I haven't know her that long but I feel that I could trust her with my most intimate thoughts and feelings. It makes a big difference.

Q: Are you noticing a lot of physical changes in yourself?

Karen: My body's giving out on me. I have stints in my urethras which helps me urinate and my body produces hard water, so the chemicals build up on these stench and causes um, the poisons to build up in my system, the ceratin and the potassium get high and I have to have the stint replaced or I go into a coma and die. And so every time I get sick, I can tell it's coming on, I get backaches and I get lots of nausea and I just know it's getting close to the time to get those stints replaced and I have to decide, do I want to get it done or am I too tired? Do I want to continue on with this? Is this is the kind of quality of life that I want?

And my blood pressure is become a problem now. It's been really low and so I spend a lot of time in bed and it's like, okay now, what kind of lifestyle is this? Do I, you know, stay in bed all the time and hardly ever see the kids or you know, what do I do? But, I feel good enough to write in the journals and they can come in and see me when they come home. Like when Kyle comes home from school and when Dad comes home at nighttime, you know, they come in here and we just sit on the bed and visit and laugh and play and have a good time. So to me if it's just two or three hours a day that I get or half an hour a day then that's fine. You know, I'll get those stench replaced when it comes time. You know, I'll just have to deal with the blood pressure as well as I can just so I can spend time with them.

Q: You mentioned you've had to cut back on what you do for Kyle and James due to your lack of energy. How have you come to that realization - that you need to let other people take over?

Karen: Lots of prayer. Lots of prayer and just reassurances from the big guy that everything's going to be okay. That there's lots of people here that love the boys and want to take care of them and want to see that they have a happy life, and, I mean, it's still hard...thinking that I might not be here for certain things, but it's nice to know that there are people that will be here that love them and they'll keep me alive through stories. I've talked to everybody, my sister and my best friend and have told them what I want them to tell the boys about me, certain things that I don't want forgotten. But still, it's hard that it's going to be them and not me. But, I'll be with them in spirit. I do feel very strongly that I'll still be a part of their life. I just won't be here physically.

I can't imagine that there would be a God that wouldn't let a mother still be a part of the children's lives. I just I believe very strongly that, it's such a gift to be able to become pregnant and have a baby. It's one of the most amazing things that you can do...and then to be diagnosed with cancer and say that you won't be able to live your whole life with that gift - it's hard. But I also know that we'll be together as a family. You know, everybody dies.. You can die young, you can die old, everybody dies - but you're always a family. And so that's really comforting to me.

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