Deepening of love
The following article is excerpted from Chapter 9 of Advanced
Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition, by Musa Mayer, copyright 1998, published by O'Reilly & Associates, Inc. For
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Those fortunate enough to have partners who stay with them throughout this ordeal often experience a deepening of their love. Just as individuals come to feel as if they themselves are challenged and enlarged by the experience of dealing with cancer, so the same can be true of loving relationships, which can also grow in meaning and depth and mutual respect, with the shared experience of the two partners. Bonnie Gelbwasser's love and admiration for her husband grew in the course of her illness:
My husband and I met when I was 15 and he was 18; we were friends for four years, then dated for two more before we married. This is a long and loving relationship that has grown deeper since my breast cancer diagnosis. Cancer took away my breast and, for fourteen months, my hair, and there were times I feared it would rob me of my sanity. I did not have a strong self-image before cancer; the disease did nothing to enhance that image. But my husband did. His gentleness, concern and commitment to my emotional well-being and his total acceptance of my new body (I also lost 40 pounds these last two years), have enabled me to focus on the challenges of living--rather than the pain and the disfigurement. He honors me with his love. I could not be more blessed. The bone marrow transplant was just part of the protocol. Cancer is the reality that each of us has had to integrate into our marriage and into our individual lives. And integrating cancer into our lives has been, and continues to be, our greatest challenge.
When asked how her husband had coped with her having cancer, Bonnie replied:
My husband is an uncomplicated, patient, practical and focused man. He has always believed that one does not choose how or when one dies and so he has never feared death. He has coped with my cancer the way he copes with the other parts of his life: he gives thoughtful consideration to the issues, evaluates the alternatives and determines his course of action. That is not to say he doesn't cry (he's actually someone who cries a lot, usually because of something one of the kids is going through), but just that he finds the strength he needs to keep himself and the rest of us moving along. He told me years ago, when we were still teens and I could not see myself spending the rest of my life with him, that I could be certain of one thing--that he would always be there for me. There was no decision for him when we learned I had breast cancer. He would do whatever needed to be done to make this easy for me and for himself and for our family. And he has done just that--with grace and courage and love.
Kim Banks also felt that the cancer had drawn her and her husband closer:
I'd heard that cancer could break a marriage or make it better. Ours has definitely followed the latter course. We're best friends and I feel that we don't take each other for granted anymore. We share and make plans together more often now. While we plan more, we're much more "in the moment" than ever before. There's an intense intimacy in staying in the moment, really enjoying each other. We don't put off the things we really enjoy doing (like sleeping in and snuggling on a Saturday morning) and we're much better at prioritizing our lives. We love to camp and have spent every other weekend this summer up in the Rocky Mountains. When camping I try to put the cancer behind me and I feel healthier hiking in the woods and breathing in that wonderful, clean air.
For Mary D'Angelo, as for many of those I interviewed, the reality that time was short was what served to enrich and deepen an already good marriage:
When you think you have the rest of your life, you love each other but you keep putting things off. You think there will be time. But we went through a period when we thought I didn't have much time, of traveling every place, and that was great because when we were traveling, I thought--well, I had read in books that you shouldn't go on vacation while you're on chemotherapy, because you'll get depressed--but when we were traveling, everything was just so intense. We felt that maybe it would be the last time we were in Paris, or the last time in Italy. I was able to let go and enjoy every moment more than I ever had. We realized that these trips are so much better, and we're taking a lot of them. We never would have allowed ourselves to do that. My life is so much fuller now, because I'm ill.
This year, the trips have calmed down, because we ran out of money. But I also feel that the traveling was like an immediate reaction. The trips are not even that important to me now. It's just being with him. I notice this--well, I'm really glad there are no children at home now, because they're distractions from being with him. I like simple things now. He comes home and I want to have dinner for him. I always want candles and flowers, a bottle of wine and conversation. Not because I think it will be the last, but because we spent so many years with meals with three children, and high chairs at the table, struggling.
Charlie feels sad about that. We put off a lot, struggling to raise a family and thinking that we'd have all this time, and he feels cheated. I don't feel that way. I feel grateful that I was able to raise my children and that they're all well-launched. In a sense, the major part of my work, with them, is done. So I'm grateful about that. I just want the remaining time to be as good as it can be.
PJ Hagler and her husband, Mike, wrestled with feeling their lives had not taken the direction they hoped for:
Mike and I have been together since we were kids and truthfully we always thought of our wedding vows in the positive: for better, not worse, in richer, not in poorer, in health, not in sickness, and that death would be in our very old age. So at 34, being told I had cancer and that it was very bad and that statistically (in 1984) I had 5 years at the most, our entire lives were changed. So for the next 12 years and counting I have dealt with cancer every day of my life. I am limited in what I can do, where I can go. My entire life has been different than we planned.
Stories from partners: "Things are back to normal"
Three of the partners of women with metastatic breast cancer wrote about their sense of what life was like for them, with all its fears and changes. It is not only their devotion, but also their sense of the pleasures and problems of ordinary domestic life that form an eloquent testimony for human coping and adaptability. For Lloyd Multhauf, a metaphor best expressed his experience of what it was like to live with his wife's metastatic disease.
I have at times thought of the experience of Sharon's cancer as floating down a river in a boat with no means of control, while hearing the ominous sound of a waterfall ahead. When we were first told of her metastasis, we felt we had heard a death sentence. We would not have acknowledged it then, even to ourselves, but I believe we both felt it. We right then were in the churning river, knowing we were approaching the waterfall without any hope of avoiding it. You might ask why I say "we" were threatened. For me it was because the thought of approaching Sharon's death, and of living in an emotionally depleted beyond, was frightening.
Fortunately, for both Sharon and me, our reaction to crises is to focus on what we can do, rather than to dwell on what has happened or how it might have been different. Neither of us is inclined toward self-pity or a sense that life, or even God, is unfair. So, we read extensively, talked to doctors, and in general, tried, as quickly as possible, to get information so that we could make the best decisions possible to gain a sense of control and avoid feeling victimized. The immediate treatment decisions were made, and after a time, we began to feel reasonably well informed.
Several months later, after we had taken a Caribbean cruise, we found that it didn't feel like our last vacation. We went through the trials of a rebelling teenager and were emerging from what seemed like a tunnel. The tamoxifen seemed to be working, and we were leading fairly normal lives. It was as though we kept drifting down the river, all the while hearing the waterfall but never reaching it. In fact, the sound seemed less intense. And at times, I even fleetingly wondered if I was hearing a waterfall at all. Maybe it's just wind in the trees. Doctors don't really "see" cancer in bones, they just see, on bone scans and MRI films, light and dark areas that they don't really understand but, through experience, have come to interpret as cancer. Maybe they are wrong in this case. Being a scientist, I find these thoughts don't persist. But I do entertain thoughts that perhaps the waterfall is a long way off. And I begin to think that there may be an opportunity to get to the shore. Maybe if I try hard to find a way. Maybe we'll be lucky. Maybe there will be a bend in the river and we'll be caught in an eddy where we can grab a branch. These, of course, are those hoped-for cures, or new ways of achieving long-lasting control.
But even time itself is a gift. After all, mortality is a fact of life for all of us, and my fears are mostly associated with the effect of my own death on the lives of those I love, or of Sharon's death on the family and me. Those fears have already diminished as our children have gotten older, although as long as there are cherished relationships, they will always be there.
For Terry Houlahan, life with Nancy Gilpatrick was difficult to describe to the outside world, marked as it was by subtle realizations and "ordinary" moments--and a new sense of what normal had come to mean.
Well-meaning friends and acquaintances approach me at work or on the street, in shops and stores and say, "How is Nancy?" They pause and search me for any clue I'm giving a perfunctory answer or putting up a brave face, stoically holding back my pain.
Living with someone who has cancer means I'm enmeshed in the routine of our lives. I don't begrudge anyone inquiring into Nan's health but questioners want to know the highlights. Once in a while there are big events--these are what the people who ask usually want to hear. The "Nancy has metastatic disease in her bones and her hip fractured and now she has to use a walker to get around and a wheelchair if we are going any distance at all," or "Nancy is going into the hospital for super high-dose chemo and a stem cell transplant," or "Nancy got the tests back and it looks like the chemo has stopped working." That kind of stuff. Unfortunately, cancer is a chronic disease and chronic is mostly boring. For us down here in the midst of things, highlights type stuff is most always yesterday's news. Nancy and I live in today and lean towards an uncertain tomorrow. So when people ask, "How is Nancy?" I have to pause and think to see if some big deal has happened lately.
A friend at work asked the other day, "How's your girl doing?" It was about 45 days since the stem cell transplant and I stopped to think if anything had happened lately. Nothing. So after a moment I said, "She's doing good. I think everything is kinda getting back to normal."
Then I got to thinking, what is normal?
Next morning I read an article in the local paper. A staff writer had written a series of articles about hiking to the highest point in every county in Utah. Some high points were easy, some were real alpine summits. I was jealous. Washing the breakfast dishes, I was thinking about the article and about how much we love to hike. I thought, "I'd love to do that some day. I'd like to do it with Nancy."
Right about then my reverie was interrupted. "Honey, would you let Harriet out?" The dog needed to go out for her morning constitutional. Sitting at the table, Nancy was closer to the door but her hip pain had flared in the night and she was too sore. Considering how her hip felt, the task of rising out of her chair and walking seven steps to the door was more than she felt up to.
"Sure, honey." I said. I stopped washing the dishes, dried my hands and walked over to the door to let the spaniel out.
Things are back to normal.
Embracing his wife one morning following her recovery from HDC, Glenn Clabo struggled to express the complexity of fear, tenderness and joy that he felt in that fleeting moment:
Since the sudden death of my sister, when I was young, I've always wondered what would happen if I was placed into a situation like the one I've been in for over a year now. A situation where someone I let myself fall in love with again...faced death. Now I know...I wish I didn't. The fantasy was many times easier than this reality. Something happened this morning that made me face the reality.
During our morning hug I noticed something. When Barb settled her head against my neck I felt her hair. To the uninitiated that's no big deal.... To this man it somehow made me snap to attention and feel something down deep. At that moment, I couldn't understand what that something was. It was there and gone in an instant. Coffee and the plans for the day took over...until we headed off to work.
I couldn't get it straight and I couldn't get it out of my mind. That feeling of Barb's hair on my neck. What does it mean? Why was it so important?
It's the waiting that has crawled inside my head. I know that the long and torturous road has led us to this rest stop...but we can't rest. We can't forget where we've been, or who we were...nor do we want to. We have gone far beyond change and moved into something so different it doesn't resemble our past. It never will.
I now believe this rest stop was placed here to renew our energy to move on...to find what is ahead. It wasn't put here to just wallow in our own worry pit. It's here to focus our life...to help understand our meaning. Make us realize that we are different and will never be the same. Last year at this time we were both looking into each others' eyes wondering if we would see another Christmas together. Barb was so worn out from treatments that all she did was sleep and worry. Barb's hair is completely different than it was in the other life...but it's here! But she is here!
In a few hours, I'm going to leave work, grab my love by her hand and steal her away from her job. We are going to get ready for Christmas. Start with lunch, walk the stores, spend some money, take in a movie and spend a quiet evening at home. Tomorrow the tree that's been sitting on the deck will be put up and filled with years of collected decorations. The house will be filled with Christmas cheer and a realization that we have too much to be waiting for...too much to be thankful for.
Conflicting needs and priorities
In a crisis, most families are able set aside other members' needs to focus on a very sick person and doing what is right for them. But as weeks stretch on into months, and then years, conflicting needs and priorities are bound to arise. The drama of treatment and remission recede into day-to-day life, and become part of a new normalcy, of a kind. And life goes on. Other family members have problems, too. After a family crisis reminded her of this simple reality, Bonnie Gelbwasser wrote:
I have come to believe that the lesson of this is that cancer patients are not protected from the day-to-day challenges of living. The flat tires still come, the kids do dumb things, the dog throws up on the rug just when your guests drive up, and the power goes out before you can shower!
When Sylvan Rainwater became seriously ill herself, her life-partner, Pam Hiebert, was suddenly thrust into the unfamiliar role of caregiver. Sylvan's analysis of this time is a classic report on the kinds of problems couples face in situations like this:
The role reversal has been one source of stress, I suppose. We've learned how to have me be the caregiver and her be the one needing care (or, as we recently named the roles, "mother" and "queen"). I suppose at first glance she thought she already understood the mother role and would find it easier. In my hospital room after the surgery she announced to everyone that she would much rather be mother than queen. We all got a lot of laughs out of that.
But there were two problems with the role reversal. One was that I expected her to do the mother role as I had, to give me the kind of emotional support I wanted, to be unfailingly there and patient and listen to my problems and give me lots of strokes for how well I was doing. For her part, I think she took on the support role as she would have wanted it to happen--the supreme organizer, the one clearing the forest to make it safe for me. Our different expectations eventually clashed in a variety of ways.
The other problem with the role reversal was that she was still dealing with illness herself. It was difficult for her to process the recurrence she was going through once we discovered that I had health problems as well. She was being pulled too many ways. And her Amazon role came out in full--she wanted to do it all, and ended up taking on too much, even though we both knew the risks involved in that. I had learned, painfully, that I couldn't do it all, couldn't always fix things, couldn't, in fact, save her life. Pam knew this all theoretically, but still bumped up against it herself by taking on too much and then crashing with fatigue. Inevitably, it came out as resentment of me. And of course, it was difficult for me to give her the amount of support and space she needed to deal with all her issues because I was involved in my own fears and issues.
During her illness, the loss of Sylvan's income had placed even more pressure on Pam. Already juggling medical appointments and a full-time job, Pam felt some resentment despite herself at the added financial responsibility. Sylvan was painfully aware of Pam's feelings. "Really not fair, and I hated it, but didn't know what else to do," Sylvan acknowledged, and reported a crucial moment that served as a turning point for them:
When Pam finally asked me what I wanted from her, I had to think awhile, but finally said I needed her to appreciate what a tough spot I was in. She thought that over and replied that she could call a bunch of people to come in and do that (what an organizer!). I could just picture it, and had to laugh, but said, no, I needed her to appreciate me. Later that day she brought me flowers and told me how much she appreciated all the work I do. Exactly what I needed to hear. A good example of her sensitivity. Sometimes you just have to ask. And I suppose that's the crux of the matter. It's easy to fall into the trap of wanting the other person to "just know" what you need and provide it without being told.
Pam was also candid about her own responses to Sylvan's illness--and to Sylvan's full recovery as well, an experience that was poignant for them both.
Many of the feelings I experienced once Sylvan came back from the hospital and began her eight weeks of recovery are difficult for me to fully admit about myself. I think ultimately I was projecting my own feelings of vulnerability on Sylvan. I think I was trying to get in touch with the likely possibility of my living with less quality of health and I was frightened. Maybe it was the dark side of me that saw her able to recover and this just reinforced the fact that my disease is a one-way road. Such a mixed bag!
When I heard her doctor say she would be feeling much better after recovery and that the worst was over, it brought home something I had forgotten: it was possible actually to have a disease that could be cured. The optimism in her doctor's voice was far different than the pessimistic voice of my doctors. It seemed to drive a still larger wedge in my mental separation of wellness and illness.
Sometimes, differences in temperament and personality can lead to conflict. Although he loved her deeply, for Bob Crisp, taking care of his wife, Ginger, didn't come easily, something he attributes in large part to his personality, being by inclination a loner and thinker, the "prototypical college professor" type, a man who loves ideas but is often uneasy with people:
Being thrust into caregiving for me is like being a fish out of water. It requires special effort and directed thinking to do what needs to be done. I'm better at the physical stuff, like getting laundry done and taking Ginger to appointments, and not so good at emotional support. I have to make conscious efforts to give her a hug or kiss, to listen to her fears and concerns, and to be present for her. These things are not so natural to me and they take more energy than they would for others--particularly those where this comes naturally.
At other times, it is the patient's concerns about being dependent upon others that interfere with this process, as Scott Kitterman experienced with his wife, Mary:
One thing I have repeatedly told my wife is that it is not her place to judge the limits of commitment that others have to her. If she is too much of a "burden" people will bail out. No one has yet. If those of us around someone fighting breast cancer are willing to be there and help out, those who are fighting breast cancer should trust us to have our own reasons and not second-guess our decision to help.
There are also inevitable conflicts in priorities. A person with metastatic cancer may understandably be living more in the moment than in the distant future, pursuing short-term interests and goals, while other family members' interests may be different. Bob Crisp raised a few of the emotionally charged questions many couples face and yet find so hard to discuss.
Do people with cancer get license to do all the things they've wanted to do, even if it causes financial difficulty? Or does the person live life as normally as possible? Fighting the beast dominates the lives of people who have the disease, but how much should it dominate the lives of those around them? Should their children change behavior and patterns or go on with the softball or band and live as if there was no cancer? Should the spouse continue to play golf, or go fishing, or play poker, or other things like they used to do, or give these up so as to have as much time and help for the spouse with cancer? If the child wants to stay in band given the time it takes, or the spouse wants to continue his regular Saturday golf game, should the person with cancer ask them to quit to have more time together?
Personalizing these dilemmas, Bob risked disclosing the sort of universal perceptions that are always so difficult to talk about--his sense that whatever his love and loyalty to Ginger, her road, in fact, diverged from his.
In some ways we are closer, but in others we are not. It's a weird thing when I'm healthy and doing everything I would normally do while she has become increasingly limited in what she can do. She now has oxygen. Walking up one flight of stairs will put her heart rate to 145 and her blood oxygen levels fall like crazy. I still want to do some of the things I love to do: go to basketball games, play racquetball, go fishing, but she became increasingly limited in what she could do. This continues to get worse.
Cindy Wirth was six months pregnant when her breast cancer was first diagnosed. Their son Matthew was three years old. Gerry is candid in describing his feelings at the time.
When Cindy was first diagnosed I wasn't very understanding. The way the adjunctive treatment changed our lives was hard for me to accept. It got in the way of some personal goals. Lots of people had cancer and survived. Why did this treatment have to be so disruptive? Caring for the new baby was very difficult for me. I resented not having all the help and support that I had with Matthew.
His attitude changed, however, on her diagnosis with metastatic disease less than a year later.
I focused on getting her well. I really felt guilty about my earlier attitude. So I just focused on Cindy's treatment and supporting her.
The time of her high-dose chemotherapy was particularly difficult for Gerry.
I found it hard to prioritize my time. Work was not an issue. My supervisor told me to show up in the morning so he could take head count. After that he didn't care where I was. My coworker kept up with the load so I had time. The right way to spend that time was a problem. When I was with Cindy I worried about the kids. Cindy was "sleeping" a lot so I had plenty of time to worry. When I was at home with the kids I worried about Cindy: was she okay, was she lonely? It didn't seem like there was a possible answer that was correct and felt right.
Gerry speaks for many couples who have been through this emotionally troubling time.
This experience had very positive and negative effects on our marriage. We cherished each other and our children more then ever. We were not as wasteful of time. When you are well there is always tomorrow. We were starting to realize that we might not have as many tomorrows as we thought.
This experience also added tension to our relationship. Each of us feared what would happen if the HDC did not work. Each of us did not know how much to tell the other of our feelings, in fear of hurting/worrying the other. Cindy wanted to live with more gusto, engage in long-term projects, like remodeling the house, etc. I was very hesitant to do that because I was unsure what the future held for us. Cindy had several side effects to the preparatory chemos that required hospitalization. That experience plus the pressure it put upon me led me not to want to disrupt our lives and routines because I never knew when I would need to go into hospital mode.
It's safe to say that there are no right or wrong answers to any of the questions posed directly by Bob Crisp and implied in the words of so many others. Each couple, each family, tends to arrive at an understanding about conflicting needs and priorities that makes sense to them. The important thing is for all the people involved to keep on talking and sharing their thoughts and feelings.
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