Talk Shows & Stories : Featured Stories : Paula

Paula: A Wife's Story

Recorded September 28, 2001

Listen With 23 minutes, 40 seconds.

Username: paula

Caring for a Husband with Cancer

Hi, my name is Paula. I'm 44 years old. I live in the mountains in Virginia and I'm a caregiver to my husband that has cancer. He was originally diagnosed in February of '93 and was in remission for just about six years, and it came back in October of '98. It started out, it was inside of his bladder, and when it came back in '98, it was in his lymph nodes. He's young; he was 43 when he was initially diagnosed, so everything that we read, and all the doctors that we talked to, everybody that we had dealings with were used to dealing with people that were considerably older. The average age for my husband's type of cancer is 75. So it was interesting. We've done a lot of reading, which has been very helpful because we haven't been able to get a lot of good answers, at times. It started in '98 with some chemo, the week of Christmas. He had a bladder removed and bladder reconstruction in June of '99. The surgery was not successful in the fact that his bladder doesn't function; he has to catheterize himself every three to four hours, so that's kind of a drag. But then he did some more chemo after that. He had [a] seven-month remission last year, and this year it's only been about three months; it's back again. We found out in July that it was back, and he's not taking any chemo at the moment; he's doing some alternative things. But he said he would do chemo again if it gets any worse.

It's been a very trying three years. There's been good things; there's been bad things. He's been very sick at times. He doesn't have a lot of good days. He'll have a good day or two, and then he'll have a couple bad days. He gets depressed because he's home by himself all day. He was home by himself all day and I just got him a little kitten last week to keep him company and he named her Chemo. He said the chemo did good things for him, so he thought this little kitty was going to do good things for him, too. So she's here to keep him company during the day.

Unfortunately, I have to try to balance work and taking care of him and the house and the yard and the things that he's not able to do where I've had to pick up the slack. But I've also gotten very good at ignoring things. I don't pay any attention to the dust bunnies or the fact that my grass is probably twice as tall as any of the neighbor's because I'd rather spend my time with him. When the urge hits us to do something--we go do it. It has changed my perspective dramatically. I've learned that a lot of things that I felt before were important aren't important, and like the book says: "Don't sweat the small stuff, it's all small stuff." The only thing at this point in time, the most important thing to me is him, taking care of him and making sure that we give him the best possible care wherever and however it may be. Just try to do things together and things will make both of us happy. It's hard trying to balance things. I don't have any time for myself and sometimes I resent that. But my half-hour drive to and from work gives me time to reflect on things, and the days that I'm upset, that's when I do my crying, or my screaming, or whatever that day's feelings may be. I try real hard not to show my emotions around him too much. I think that's important. It's important to be honest about your feelings, but he doesn't need to see me on my days when I'm having trouble coping with things. And those days happen. But we have two grown boys, two grandchildren; a six-year-old granddaughter and a fifteen-month-old grandson. They are the best medicine in the world.

Laughter Helps Us Stay Positive

Our granddaughter, I remember one time when Larry first got sick. He had just finished, I think his second round of chemo, or was in the middle of his second round of chemo and he took Taxol and Carboplatin which made him feel pretty lousy and made him lose all of his hair. Our granddaughter has a picture of us up on her vanity. She was fighting a cold and she looked at me real serious and she said, "Grandma, Granddaddy's sick and he lost his hair. Since I'm sick, am I going to lose my hair, too?" Of course, things like that just put everything in perspective. You can't help but laugh, and she knows Granddaddy's sick and she pampers him. She does little things to help him out and little things to cheer him up. She makes him cards and draws him pictures and we talk on the phone to her regularly. Every time we do his whole outlook improves. Kids are really important and they make you smile kind of forget about things. They have just a neat perspective on everything.

We've come into contact with some wonderful people in our time with different doctors. We've traveled--he had his surgery in Indianapolis at Indiana University--and we met, we just--everybody out there was just really phenomenal. Everybody was nice, the doctors, the nurses. We had a wonderful experience there. Something that we've always--we try to laugh, we laugh, we joke. When I'd sit with him while he was taking his chemo, we'd talk about different things and we'd laugh and we'd cut up, and most of the time everybody in the chemo room was laughing too. We'd have the whole place going. The one oncology nurse, she thought it was wonderful, and after Larry finished his treatment, she even wrote us a letter and told us that she had thoroughly enjoyed meeting us. She thought that our outlook on life was great. We've had a couple of people in different offices tell us that we should take our show on the road because we always managed to get everybody, maybe not everybody, but we get a smile out of most people.

That's important, I think. All too often we get caught up in the bad aspects of the disease. They've told us that my husband's cancer can't be cured; we can control it and that's the best we can hope for. But you can't dwell on what might be, you have to keep a positive outlook and you have to laugh and you have to enjoy the days that you have. I wake up every morning and I thank the dear Lord that we're both still here and that I have my health. But you have to live each day like it may be the last because none of us know and I think that's really important.

Friends and family are extremely important. Our family has been very supportive. They call regularly and they send cards and I'm always getting emails from different members of the family that are far away and cards and little jokes. Unfortunately, most of the people I work with don't understand what I'm going through, but there's a few that send me jokes or send me articles that they see. That's hard for me because I think the people that I work with, they don't understand that it's an ongoing thing. That even though the surgery and the chemo is in the past for the time being, that no matter how long it is between appointments, or how close appointments are together, it's always in the back of your mind; if you're in remission, that it could come back. If it's active, then you wonder what it's doing.

Caregiver as Patient Advocate

Sometimes it's hard to get good answers from some of the oncologists, some of the doctors, and you have to bug them. You have to stay on them. My husband jokes and tells me I'm his patient advocate; he doesn't need one from the hospital. I go with him every time he goes into the doctor. Something I read, right in the very beginning, a good book called 50 Questions to Ask When the Doctor Says it's Cancer. One of the first things this gentleman tells you is to get a book, a journal, a notebook. I bought a small spiral notebook that I carry in my pocketbook, and before every doctor's visit, I write down questions and I write down the answers that they tell me. Most of the time, soon as I walk out the door, I'm writing down new questions because there's something that I've forgotten. Several of the doctors have made it a joke now, that when I walk in, they'll say, "Paula, where's your little green book?" because they know that it's there and they know no matter what's going on, that I have questions and they're not leaving until I get answers. That's very important because it's so hard once you get in the doctor's office to be able to remember everything. You've got so much on your mind; you've got so many things going on, that you can't remember. I think that if anybody asked me one thing that I felt was really important, that's important because I don't know how many times I've gone back to find out what this doctor said or what that one said, or who told me something. I write down when his tests are scheduled, when his chemo is scheduled, what he's taken, what amounts, and that way there's no question. If I need to go back and find out something, it's there in that book; all the doctors' phone numbers and addresses and emails and faxes and stuff.

Unfortunately, during this time we've met other men with this same type of cancer and we've lost several of those. That's tough. It's tough to know how much to share. I do a lot of reading and that has helped tremendously. We've spent hundreds of dollars on books in the past few years, but I read everything I can find. I know what's out there. I'm learning what's out there. I'm learning what's available. It also helps me in dealing with the doctors because when we go in and I start asking questions, they realize that they're dealing with someone that's not totally in the dark about the situation. They're going to have to deal with my questions, or deal with our problems, because I have an idea of what to expect, and that helps. Being informed, I think, has helped both of us tremendously, having an idea of what to expect with the different treatments, what to expect with surgery, and different tests, and not being surprised when we get in there. Being informed, I think, is very important. It helps you and it helps the doctors. I can't even count the amount of people that we've come into contact with over the last few years that are in similar circumstances battling one type of cancer and another, and don't even have any idea what type of chemo they're taking, and I just can't imagine that. I want to know everything.

I think being a caregiver it's hard to find time for yourself, hard to find time to do things. I feel guilty when I'm doing something that doesn't involve my husband. But I love plants. I have a house full of plants, and that's my relaxation. I raise orchids and I work in the garden--that's my escape. When I need to get away for a few minutes, I go out and pull weeds or hoe the garden or do something. That's my time, that's my escape, that's my coping mechanism. Everybody needs something, whether it's riding a bike, doing exercise, cooking--you need something. I've given up cooking. My Larry has had a lot of stomach troubles, and none of the doctors can come up with any real answers. I think it comes from his surgery where they took part of his intestines to make a new bladder. I think it's scar tissue, and he has his intermittent bowel obstructions, and he gets sick and runs a temperature and vomits so he doesn't eat on a regular basis so I don't [cook]. That used to be an outlet for me. I used to love to bake bread and cook, but I don't do too much of that anymore. But he's, at least in that respect, he's not losing weight right now, so that's a good thing.

Caregivers Learn from Experience

Something that has really helped me with dealing with my current situation, unfortunately, I've been caregiver, at least part-time caregiver to my mother-in-law who died of breast cancer in May of '85 and then my own mother who died of lung cancer in July of '96. When my mother-in-law was ill, we all took turns taking her to, she took radiation, she took chemo, so it was a 50-mile drive each way to radiation. We took turns and I'd take her some days, my husband would take her, and there was other family members. But we spent a lot of time there and I know she, she got to the point that she wouldn't eat, towards the end. I think my husband and I have both learned and we've both felt bad because we tried to force her to eat, tried to force her to do things, and now being in similar circumstances, we realize that we probably shouldn't have done that. We probably should've given her a little more--cut her some slack.

My mother was ill from November of '95 and until she died in July. From November until May, they couldn't come up with any kind of explanation. They said it was pneumonia, then they said it was bronchitis, but my mother had smoked for 35 years and they diagnosed her on May the 10th as having lung cancer, and she died July 19th. My brother, my sister and I took turns. We'd each go and stay a week and take care of, help take care of Mom and take her to her--she took radiation--take her to her treatments and she wouldn't eat from the biopsy. She had a real tough time with eating, so coming up with new and different things to try to get her to eat a little bit. I learned that Ensure is really, really nasty stuff and I wouldn't make anybody drink it. But we found different milkshakes. I got very creative in making milkshakes, because she would drink those.

My husband and I and my father were with her when she died. She had hospice and they were really good except they weren't real good towards the end. They didn't help us a lot in what to expect and how to recognize signs of getting closer to the end. But I knew it because my mother and I were extremely close, and I knew when the time had come. I had called my husband on Thursday and told him to come be with me because it was getting close to time. I called my brother and sister; they were both out of town. I called them both and I told them, I said that they needed to come home. I said it wasn't going to be very long, and their reaction was, "Well, what did hospice say?" I said hospice hasn't said anything and I said I just feel it in my heart, I feel it in my gut that it wasn't going to be very much longer. Neither one of them came and on Friday afternoon about three o'clock hospice was there and they said to call the family. I called my brother and my sister, and they were both trying to get flights and trying to get to my mother's house. My mother died at 5:16 that evening with my husband and myself and my father all with her and it was--of course it was very sad--but she had suffered a good bit. I don't think she was in any real pain, but I'm glad I was there. I know my brother and sister, I don't know that they'll ever forgive themselves for not being there, but there are times that doctors and hospitals and hospice and everybody can have their opinion, but there are times that you just know, you just know.

With all that we've been through with his mother and my mother, and we've also lost both of our fathers to heart trouble, that all this has brought us much closer. We were always really close, but being through all these different things together and then his illness, we're very close. We finish each other's sentences; half the time we don't even say more than a word or two and the other one finishes the sentence for us. But I think all these experiences and being caregiver to my mother-in-law and my mother has helped me be able to deal with this situation a little bit better, but it's not new. I know I have some expectations of what was going to happen and how things were to be done. I think it's made us both stronger and we also see mistakes or things that we didn't feel were done exactly right with both of our mothers that we have tried very hard to avoid in Larry's experience. I think it's the old thing: "What doesn't kill you makes you stronger". Well, it's definitely--it's made me a pretty tough person.

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