Phyddy Tacchi, RN, CNS, LMFT, LPC
Psychiatric Advanced Practice Nurse
Psychiatry
The University of Texas, MD Anderson Cancer Center
Dr. John Mendelsohn: Hello.
The cancer experience can be difficult for anyone, but it can bring unique physical, emotional and spiritual challenges to the couple who are facing it together. When a patient is diagnosed with cancer, both husband and wife may feel intense emotions, but often from diverse perspectives. As the following video will show, these differences can bring conflict or closeness depending on how they are handled. It is not unusual for each partner to experience shock, grief and adjustment to this unwelcome interruption of their lives differently. We hope that this video will provide you with insight, hope and information as to ways of building a stronger marriage during one of the most difficult events in life.
Narrator: At the time Letty Campos was diagnosed with breast cancer, she and her husband, Arnold, had been married for 25 years. Each of them approached this new experience in different ways.
Letty: Well, he's very optimistic. He's always like, it's not a problem, it's a challenge, let's see what we can do, and how we can do it, and just go forward. So he's very much the supporter, you know, supporter for, and went through a lot with me emotionally and physically. He was my support.
Narrator: But even with Arnold's strong support, the diagnosis hit Letty especially hard. She had cancer in both breasts. She had surgery followed by reconstruction...and was treated with chemotherapy and radiation. The diagnosis was hard on Arnold, too, but he responded with the toughness and positive thinking he had learned growing up in a family of 12 children.
Arnold: I know, when we would get sick, my older brother would just come out and just drag us out of bed! Come on, you need to sweat it out! You need to run it out! You know, so with, you know, my wife, I was getting that attitude, you know, so come on! Let's go out! Let's do this -- let's do that! You know, and I was always trying to take her out. But, you know, I started noticing that she wasn't doing that.
Arnold: ...I was actually putting a lot of pressure on my wife.
Letty: ...I didn't have his mindset, and so it was hard for me to just get up, physically...or emotionally. You know, it was emotionally draining...
Arnold: ...every time I couldn't understand her, or couldn't deal with it, you know--I would just go outside and just, you know -- cut the whole yard, and continue with the bayou, and that's the way I coped with it. ...She kind of started opening my eyes. I said okay, well, you know, we need to talk, well, you know, okay, I'll try to listen more often. You know, so just talking, and coming home, and just asking her, you know, hey, how was your day? How are you feeling? Those little talks that we had kind of opened up to a larger conversation, so, and that helped us. That helped me, really. One of the things that did come up -- but it's been a while -- you know, was, you know, she...she did mention to me, she said, well, if I do die, will you marry? (they both laugh) And again, I didn't -- I got to the point of, hey, let's not talk about that. It's like we're not there yet. It's not going to happen. We've been married for a long time and right now another woman is not in my mind.
Well...I guess it's just to make her kind of get it in her mind ... not to worry about the future. I'm going to be there.
Narrator: One of the difficult topics they were forced to face was Letty's intense fear that the cancer would come back.
Letty: Recurrence -- that's my biggest worry. My anxiety is, I'm going through all of this physically, emotionally, and what if it comes back? I don't want to go through it again...he could see my point that what if it comes back, and he didn't want to accept that. That was really hard for me to accept, because it's like okay, well, I'm worried, why aren't you worried?
Arnold: ...that's in the future. It's out of our control. You know, and I've always had that attitude. If I can't do something about it, it's out of my control right now, because we'll deal with that when-when it comes.
Letty: ...I just came to peace with it, and so I said, okay -- whatever comes my way, I'll deal with it then.
Narrator: Three and a half years ago, Stephanie Johnson was diagnosed with advanced gastro-esophageal cancer. She was 36 years -old.
Stephanie: ... I had a complete gastrectomy, and they removed all of my stomach and the lower portion of my esophagus. Then they gave me about six weeks to recover, and then I had chemo and radiation regimens that summer.
Narrator: Stephanie and her husband, Greg, were told by her local physician that, if the cancer were to come back, there was nothing more they could do for her. So the couple moved with their three young children to Houston to be closer to MD Anderson Cancer Center.
Greg: We were kind of the all-American family. I had a business that was succeeding, three kids, a dog. But Stephanie kind of had -- she had her business going and lived her life, and I had my business going and lived my life, and we crossed paths at night and really didn't fight that much, really didn't have any major issues and we thought life was fantastic. What we learned is that our marriage could have been a lot deeper through all of that time. After cancer, the -- the intensity of our love for each other grew. But that same intensity would also come out in arguments and fights and things like that. So where we didn't fight before, we began to fight more after cancer. But at the same time, we loved each other more deeply after cancer.
Narrator: In adjusting to the situation, the two have had very different ways of coping with Stephanie's cancer.
Stephanie: He thinks of the glass half full but sees the potential of what could be done and fixed or changed. I tend to see the good in people. I tend to not see the bad side of things. I think everything is going to work out somehow.
Greg: ...Stephanie and I have both battled with depression as a result of all this, and one of the symptoms of depression is you become very irritable, and that feels like there are times when every nerve is just raw, and so any little thing will-especially me more than her-would just set me off...
Narrator: During this time, Greg noticed that his depression was getting worse as the stress mounted.
Greg: I remember feeling like that if one more thing happened in my life, I was going to snap. I remember at one point ending up just on the couch sobbing uncontrollably. And then one morning or one night I had stayed up all night. Couldn't sleep. My mind was going crazy and I had decided that Stephanie and the world would be better off without me, and that was the morning I woke up and started drinking, and I told Stephanie I was leaving...
Stephanie: ...and it just took, you know, a long time to get the right combination of drugs to help him manage life.
Narrator: As time goes on, the couple continues to struggle with uncertainty about the future.
Stephanie: ...we've also had the financial stress that has been with us for two years or so.
Greg: Do the financial stresses scare you?
Stephanie: They haven't scared me. I've had a peace about it all during it.
Greg: It's-it's very scary, because some of it is I guess the husband-provider thing of wanting to give my family a nice place to live and food on the table, and having to constantly say no, we can't do this, because we don't have the money. And then there's the stress. The doctors say that Stephanie's incurable, and so there's the guilt that goes with this could be the last days of her life, and I can't even provide her -- I'm struggling to give her even basic needs much less anything nice, and so it creates an extreme sense of guilt and pressure as we face, you know, bankruptcy and fear of losing the house and all of those kinds of things. Sometimes it feels like I've failed.
Narrator: Through it all, Stephanie and Greg have been able to maintain hope.
Greg: As it pertains particularly to cancer, the concept of hope is that every drug was a miracle drug for somebody. Even when you go back to aspirin. For the first person who took aspirin and it cured his headache or his ache or his pain, it was a miracle. I tend to be a never-quit kind of person even though I can get obviously very down. Somehow or another come back and it's OK. Let's get back in the fght.
Stephanie: Each treatment, you just go into it with such faith and hope, and then a CAT scan let's you know that it didn't work. The first day when they tell you, it's very difficult. The next day it's, okay let's start planning. Let's jump back in and figure out where we go from here.
Greg: I would say, let people help you. They want to help you. If you don't know anybody in the area, call churches, call synagogues, call whomever; because there are people out there that want to help.
Stephanie: It's been amazing since we've moved here just how helpful the church has been...how they've bee there for us, want to do more, but we haven't needed them to do more, because our neighbors have been so amazing. They have shuttled our kids. They have provided housekeeping. They have made meals. They've mowed our yard.
Greg: At one point, they raised money and saved our house.
Stephanie: I think we had a very strong marriage and this has definitely brought out the strong points and the weak points and strengthened our marriage beyond what I ever thought it would come to. More intimate; focused on doing things together more; wanting to spend more time together; cherishing the-the moments that we do have together; and our biggest thing is trying to not put off until tomorrow something that you can do today.
Narrator: Barbara and Sidney Englander had been married for only two years at the time he was diagnosed with leukemia. It wasn't the first of Sidney's health problems. He also had had testicular cancer six years earlier. He had a difficult time keeping his spirits up.
Sidney: By nature, I'm a pessimist. I think I got that from my mama. She's always a pessimist, and that's me.
Narrator: Barbara, however, is an optimist. One of the challenges for her during Sidney's illness was to encourage him during difficult days.
Sidney: She just was always there for me, when I would get down on myself -- she terms it "pity parties." I would-I would get that syndrome... 'why me? Why me?' Because I'd always thought I was bullet-proof. I was in sports all the time, and jogged, and I was a weightlifter, and this hit me -- and I just always was saying 'why me?' And she would just pick me up, and say 'things will be better, don't worry -- you will get better.' And it did work.
Barbara: I guess I tried to take that word 'worry' and pitch it out the window, because all it does is get you sick. It will get you mentally and physically sick and worrying is not going to solve the problem. We're positive in this house. I don't want the positive out of the house. I want it in the house all the time.
Sidney: Since I am a pessimist, I needed her optimism to get me pumped up again.
Narrator: Sidney traveled from his home in Louisiana to MD Anderson Cancer Center for a bone marrow transplant. It was grueling. After the transplant, he hit rock bottom...physically and emotionally.
Barbara: One day I was getting ready to go to lunch with one of his employees, and I would come back out from the bathroom and check on him, seeing how he was doing. He was sitting in a chair, and I looked at him. I said what's wrong? He says, I just want to hang myself. And I immediately went out to the nurse's station and told them, because you don't take anything like that lightly. I mean, he was just that depressed. And I didn't want to see that happen.
Sidney: I had so many bad days, and that must...I -- I don't know what brought it on, but I remember laying in the bed. I was even thinking about how I would do it, what would I use, looking around the room to see, is there rope, or belts or whatever. It was terrible. After it was all over, I was -- I was embarrassed. I was ashamed. They even sent in a -- I don't know what you'd call it -- a psych aide. An aide that sat with me, like a suicide watch. And it was just -- it was horrible...
Narrator: As the pressure mounted, Barbara began to wonder how she was going to handle all that was expected of her. Over time, she began to realize, by necessity, that she needed to care not only for Sidney, but for herself, as well.
Barbara: ...you actually have to learn when to take your time away from your loved one. You have to pick your time. You can't just go any time. You have to make sure that he's bathed, that the nurses are there, you let them know that you're leaving, and they tell you, too -- go take time for yourself.
Sidney: I think it's harder on the caregiver than the patients sometimes.
Barbara: I know there's times I can feel him tossing and turning, and I will just reach over and hold his hand, and tell him everything's going to be okay. We've made it through this and we'll make it through everything else.
Sidney: Just the touch of Barbara's hand if I'm down in the dumps, or we're laying in bed, and I wake up in the middle of the night and I'm -- I'll start crying because -- worrying about relapsing, and she'll just reach over and grab my hand, touch my hand -- -it's just, just so reassuring that she's there for me. I've got somebody that really cares and she's there for me. (they kiss) Love you.
Narrator: A cancer diagnosis and treatment may impact many areas of marriage, including the most intimate.
Sidney: Well, we had a good sex life. Ever since we got married, and all the medications I took and I guess the chemotherapy -- it did make me impotent. But I never did lose my desire, or, you know, I always had nice thoughts about my wife and making love, and over time, I see that the impotence is diminishing. So there is hope that we'll get back into a normal sex life again.
Barbara: ...we have what's called now a 'new normal' ...It's just...it's just something that no one in the world, unless you've gone through it, can actually experience it. But it does bring you closer together.
Sidney: I think we had a strong marriage, before this happened and I know it's not my imagination. I think after this has happened, I think we love each other even more and our marriage is even stronger since this happened.
Barbara: We had that bond before. But it's like I described it one time, it's almost like superglue. That bond is there forever.
Narrator: Sidney has now been in remission for two and a half years. Even though he's trying to maintain a positive outlook, there are fears about not being in control of what happens.
Barbara: I will not let him go to the fact that if he ever got the leukemia back, that he would give up. He's never going to give up, as long as I'm alive, as long as I'm with him. Never.
Narrator: Diane and Frank Bankston have been married for 36 years. The last 12 they have spent battling with Diane's advanced breast cancer. She's had many treatments... including radiation, chemotherapy and several surgeries...
Frank: I looked at this experience as it was with my vows when we first got married. You know, when you talk about in sickness and in health, until death us do part. You know, and I constantly remind her that, you know, we're through this together. Everything that's being done here, -even the treatments when she takes them, I say, 'We took a treatment.' You know. We do this because we do it together...when you learn to communicate and understand each other's emotions and each other's feelings...
Diane: ...it brings you closer...it brings you closer together. And that's what it's done with us. We've just come closer.
Frank: We're still in a courtship. You know,because when we...in the car we're holding each other's hands. When we're walking through a mall, we're holding each other hands, or we're wrapped up around each other...
Diane: ...it makes you feel better, especially when I'm at my sick...when I'm really sick. You know, for him to still come up behind me and want to cuddle, you know, or tell me that I'm beautiful, and I know I'm not. You know, -and he still opens doors for me, and he still, you know, does all the little things that he used to do, you know, we never stop doing that for each other...we still take showers together sometime. Sometime I need a massage, sometime he needs a massage. We give each other massages. Sometime we...we play like we're tourists, and we...we go up on the Seawall. We go down the Strand and act like tourists... just anything -- listen to beautiful music that we both enjoy -- anything that...that's positive, you know, and I love being around positive people, being around positive people makes me feel good. I draw off of that. Before cancer I was extremely active. Hype...I'm a hyper -- I used to be a hyper person, and I considered myself a bit of a super mom or a person that could do it all, could handle the...I could juggle several things at one time and do them all well and still come home and cook. You know, I was that type of mom. Now, I'm more laid back. Some of the duties that I used to do I have to deligate to other members of the family, and that's very...that was very hard for me -- very -- that was part of my depression, you know, not being able to do all the things and take care of all the things for my family that I was accustomed to doing, because I enjoyed being able to do that.
Frank: I support her 100% on what goes on with her life. I constantly let her be aware that, you know, you don't have to cook that meal today. You don't have to cook that meal tomorrow. You know, as long as we got a dollar or a dime, we can always go somewhere and eat...
Narrator: Despite their devotion to one another, there are times that Diane and Frank don't always agree...
Frank: ...there's a lot of times when we differ in...in our opinions.
Diane: ...nothing is worth falling out with someone you love this much over...over nothing in this world because when you...when you die, that's the only thing that you can leave, and that's the only thing that you can take with you. Our relationship is so important to us that there's nothing in this world that is more important than this...everything that normally happens to people in their lives still happens to us. It doesn't stop just because I have cancer -- relationships with your kids, the car breaking down...
Frank: Finances.
Diane: Finances. You know, finances have really changed because keeping me alive with all these new cancer drugs is very, very expensive, so that's very stressful...
Frank: You know. I mean, every little dime that I rake and scrape, I put it out on her because she's...
Diane: ...and I feel very guilty about that...
Frank: I...I stay happily depressed all the time because I know that there's something that's got my wife right now that's trying to take her away from me, and thoughts of that and knowing that, you know, if there is no cure, that I'm going to be without her for the rest of my life, and I just can't see my life without her ...we have been together for so long, you know, and she's my soul mate and the depression really eats me up real bad when I know that if God does take her away from me, what am I, you know, what do I have to live for? Without her, life is meaningless. It's painful for me to allow her to see me in pain...even though I know I'm a man and a man cries just like anybody else, it's just that it hurts, you know. It hurts for your mate to see you in tears and, you know, that those tears are all about you. You know.
Diane: And I'm the cause of it. It hurts me. That's part of my depression.
Frank: I'm OK.
Diane: We hold each other.
Frank: We just...
Diane: ...cry, get it all out and...
Frank: ...we hold each other, and we shed our tears together and, you know, we kind of pull ourselves stronger. You know, knowing that what we got to do we have to do together.
Diane: And we say -- and I say, "Oh, enough of that. This is depressing. Let's do something. Let's go for a ride" or "Let's put on some music." And I say, "You haven't danced with me in a long time," and we used like to go out and dance a lot...I'm a pretty good dancer. I love being around positive people and positive things because I draw off of that, and it makes me feel good, and I know that has to be doing something to that old nasty cancer in there. (laughs)
Frank: ...we had to change a lot of perspectives, you know, long-term planning is not what we do. We do short-term planning.
Diane: It's real easy during the easy times. It's all in how you handle it during the bad times. That's when you should get closer and comfort each other and do whatever it takes to make it better.
Frank: You know, we make sure that we live day to day for that day and never think about tomorrow. You know, it's all in what's happening right now at this moment and thank God that we have this moment together. You know, and just try to keep each other happy.
Narrator: Phyddy Tacchi (Tah' ki ) is a psychiatric advanced practice nurse, a licensed marriage and family therapist and a licensed professional counselor. At MD Anderson, she has counseled many couples in assisting them with adjusting to the experience of cancer.
Phyddy Tacchi: Cancer can be like an earthquake in the marriage. Just with one phone call, one's life changes forever. It will never be the same ever again. This illness takes over their whole life. It affects them financially, emotionally, physically, sexually -- every domain of marriage that you can think of is touched by this concern.
Phyddy Tacchi: The big elephant in the room becomes the fear of death on the part of the patient, and on the part of the caregiver spouse. They're both frightened about the same thing, but they handle it differently. One partner may want to talk about that more. The other partner may withdraw from that topic. Both worry about the same thing, both tiptoeing around that topic, and coping with that much differently. It can be very traumatic coming to terms with one's mortality. All along, most people operate with this veil of illusion that they're going to live forever or that their mortality is some time in the far future. A cancer diagnosis brings an acute awareness of the brevity and fragility of life.
Narrator: After her diagnosis, Stephanie and Greg Johnson found that cancer was a sensitive topic, and, at first, each one tried to avoid talking about it.
Greg: Stephanie's a very private person. So even with me through all of our years together, she's had...she's always been reluctant to really open up and share her deepest, darkest fears...and so that's when I kept saying, you know, talk to me. Tell me what's going on. But at the same time I wasn't talking to her, telling her what was going on with me. Because I didn't want to bring her down either...
Stephanie: I thought if I talked about it with him, it was going to bring him down more, and I didn't want to do that.
Narrator: In the process of adjusting to life with cancer, each partner's role may change.
Phyddy Tacchi: ...oftentimes, the caregiver begins to over function for the patient, in an almost frantic attempt to keep this person alive.
Narrator: Barbara Englander felt the need to push her husband, Sidney, to take better care of himself and be more physically active.
Barbara: Some days I would let him slide, but some days I would physically put his shoes on, put his clothes on and get him up.
Phyddy Tacchi: The caregiver is saying, "Eat more. Drink more. Walk more." When, in fact, maybe physically, they are not able to do that. It's not so much that they won't do it -- it's that they can't do it. And the patient then also begins to feel like these urgings, and encouragement on the part of the caregiver are emotionally intrusive.
Narrator: Barbara worked diligently to help Sidney during this time ...but sometimes feared that her 'tough love' approach was too hard on him.
Barbara: The pity parties, when I finally got tired of that, I said, you know, I'm mad now. I don't want you feeling this pity all the time. You know, I want you to feel positive, to keep the faith and keep going. I mean, it just...sometimes I just had...and I...I even consulted the doctors to ask them, if I was being too hard on him, because I didn't want to seem mean, but I didn't want to let him go down the tube in a depression. And they said, keep doing what you're doing -- you're doing a fine job. And that made me feel good, because I...I was feeling guilty that I was being too hard on him. But then again, if I was going to let him go to the...to that depression, I couldn't pull him out.
Phyddy Tacchi: The patient often begins to blame themselves for the burden that this places upon their loved one. In that process, either the patient and/or the caregiver may become more irritable, and resentful of this new role of the partner. Oftentimes, conflict ensues, and they're both bewildered about why they're fussing and fighting all the time, when, in fact, it is this basic issue about fear of dying.
Stephanie: Definitely we've had more conflict. By nature I get very quiet and to myself, and I-I'm a peacemaker so I want to get it out and get it over with and be done with it.
Greg: ...for a while I will just get real quiet and to myself, and then eventually I explode -- slamming doors, screaming and it's an all-out, let-loose not-pretty scene...compounded with all of the other stresses of life-whether that's, you know, trying to pay a mortgage or keep your insurance or raise three kids or whatever those things may be. Then you throw cancer into that mix, and the stress just skyrockets, and so then very little things can make a huge difference.
Narrator: For Letty Campos, conflict arose when she thought that her husband, Arnold, was unable to understand what she was going through.
Letty: I was angry with him. Because he couldn't understand where I was, emotionally. I-I was angry if he just looked at me funny, you know, I got angry. If he said anything, I mean, just whatever-if he opened his mouth it got, I got angry.
Phyddy Tacchi: The more distressed a couple is, the greater their need is to begin to learn to communicate. I think the initial conversation about death and dying issues completes that stage of the process of adjustment. That issue will re-emerge, most likely, with every CT scan, prior to every visit with the doctor, and every side effect of treatment. It's sort of like an issue that moves in and out of the scene. How do we make our lives count knowing that this is the background noise now, for us?
Narrator: In the face of cancer, it is important for each couple to find their unique way of coping.
Phyddy Tacchi: Prior to cancer, people usually live their lives with a general rhythm of goal setting, attainment, setting the next goal and moving, and progressing forward.Cancer brings a new awareness about, 'how do live life?' If you can't predict what's going to happen, how do you handle the anxiety about that? When things feel like they're spinning out of control, and life feels unpredictable from day to day, how do you rein that anxiety in? One of the best ways is to start living one day at a time. Treasure this day. Life is much more precious than money will ever be. Time together is of such inestimable value that we often take that for granted until a cancer diagnosis hits. Beginning to treasure the moment with one another begins to be a learning exercise. That yesterday is gone, tomorrow is unpromised and the only thing that we have is today.
©2010 The University of Texas MD Anderson Cancer Center
1515 Holcombe Blvd, Houston, TX 77030
1-800-392-1611 (USA) / 1-713-792-6161