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Scenes from a Marriage

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 book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Any crisis in the life of someone in a long-term relationship tends to highlight both the strengths and problems of the bond between the two partners. The ongoing medical ups and downs of advanced breast cancer are no exception. Typically, the cycles of illness consist of periods of suspicion, waiting for test results, diagnosis, mobilization of resources, treatment and remission, followed by periods of relative normalcy before the next cycle begins. Sometimes these cycles are widely separated, but at other times, it can feel like one long crisis, with no recovery time.

Even during times of remission, the awareness of cancer haunts everyone in the family, as Leo Charland notes:

Since Lisann's treatment ended last July, I have been trying to close that book. I think about her all the time and hope that she doesn't have a recurrence. I remember my personal pain of watching Lisann being tortured by the poisons injected into her body. I could dwell on this for the rest of my life, but this isn't helping me or her. I am trying to forget.

I think about the future and pray that we will never have to go through another recurrence. Deep in my soul I know how insidious cancer is. You can not let your guard down. And you subconsciously await for the next occurrence, hoping it will never come.

Lloyd Multhauf wrote about the adaptation he and Sharon have made to the disease, so far, and the changes cancer have made necessary:

After Sharon had her first bout with breast cancer, we were able to put it behind us and go on with life, regarding cancer as one of life's memories. Metastatic cancer is different. Sharon can't escape the reality of cancer, and as a spouse, neither can I. But I don't live with it as she does. I read books that take my mind in different directions. But there is seldom a day that we don't talk about cancer, and I have to accept the very understandable fact that Sharon does not engage as deeply as she once did in my intellectual interests. We really must understand each other's needs. Perhaps we are even sometimes using coping mechanisms, though I lack the skills at penetrating the subconscious to know.

I believe cancer has the potential to cause great stress in a marriage. It's easy for either spouse to feel pangs of guilt--Sharon, because so much of her time is focused on cancer-related things (much of it on the Internet) that other things get neglected, and me because I feel I don't do enough to help, or I shouldn't get tired or grumpy, but I do. Fortunately, neither of us regards feelings of guilt as being very productive. I think we're handling this okay. But when I look at other couples, I realize how different the patterns are. Sometimes it's the spouse who's heavily involved in the cancer network. Sometimes, as with a friend of mine, the spouse seems to want to deny that the cancer is happening, or at least to believe that it will be possible to get past it. Successful patterns for living with cancer seem to be quite varied because the emotional needs of people are so different. I would be quick to recommend professional counseling if a relationship became very stressful.

A number of partners and spouses remarked on the emotional fluctuations that the disease provokes. Bob Crisp described what he and Ginger went through this way:

We both go through highs and lows, not always in synch. This makes things more difficult particularly when one is high and the other low. We try hard to maintain some balance but this is difficult. Cancer is like a cloud that hangs over your head and never goes away. Sometimes you can forget it for a while.

Glenn Clabo, in the time following his wife Barb's HDC, noted a certain perverse consistency in his own emotional responses.

I'm finding a pattern to all this. When Barb is going through hell, my instincts and dedication take over. I just focus and get with the program. Of course I don't think about me much during this so when she feels better I fall off a cliff. Both emotionally and physically drained to the point of wanting to crawl into bed with a blanket over my head when it's "over." It lasts a couple of days, then poof! it's gone. The first couple of times it was tough for us both. We seemed to cross paths, with Barb going up and me going down. Now we know the whats and whys and just deal with it. Just another new adventure in the highs and lows of the roller coaster ride from hell.

Leo Charland found the same sort of pattern in himself:

I think that the caregiver gets so locked up into doing everything and our minds don't have time to think about anything more than the one we care so much about. All else is done by rote, until our loved one is feeling better. Your mind is lost and you really don't know what happened. You have been focused on only one thing. Now every other thing comes to mind. You are overwhelmed with inane things. You find that you have neglected your everyday chores and have been living for only one cause. Now it's time to get back to the normalcy of life. You have a lot to do but just don't know where to start. You say, I've got to do this or that, but all you really want to do is rest, not so much physically, but mentally.

I was going through this from November '94 through December '95. I'd had it and began to feel depressed. I told Lisann that I had to get away and be by myself, and do absolutely nothing. I went to Palm Springs and lay in the sun for two weeks. I did not think of anything. When I came back I felt human, my brain was mush but I felt good. This was my way of getting back to a normal life.

Partners and spouses also often feel powerless in the face of their loved one's reactions to treatment or disease. Glenn Clabo recalls his own feelings when Barb was newly diagnosed:

The surgeon's eyes were not able to hide what he knew. How could I keep giving Barb hope, knowing it wasn't going to be good news? I wasn't ready for this. I knew that it was very probable that the cancer was somewhere else. I was supposed to die first.

Bonnie Gelbwasser remembers her husband's pain following her high-dose chemotherapy:

My husband said the worst thing for him was talking to me on the phone in the days after the chemo hit. I would cry about how sorry I was I'd chosen to have the transplant. Obviously there was no turning back at that point and he felt pretty helpless.

Patients also worry a lot about how their partners are coping. PJ Hagler's concern for her husband, Mike, was evident in this message to the husband of another woman with metastatic disease:

It's getting so hard on Mike, I know it must be hard on you as well. If there was just some magic you guys could perform that would give you something to do to feel you were able to achieve something. I keep telling Mike that his being there and holding my hand when I need it is the greatest gift. We don't need much. Just having you in our lives is what keeps us fighting in the first place.

Kim Banks believed that for her husband, Richard, doing work around the house that she couldn't do anymore was one thing that helped both of them to cope with the feelings of helplessness:

Richard has taken up some of the housework and errands that are difficult for me because of the mets to my back. He rarely complains about the additional work he's taken on, and I think it's made him more aware of how much work is involved in keeping up our household. Of course I praise and thank him repeatedly, which he soaks up. Remarkably, I think this has helped both of us. He sometimes feels powerless in our battle against my cancer. By helping me with the house, he feels that he's at least making things easier for me so that I can focus on fighting this disease. My guilt over relinquishing my duties to him is lessened because I know he feels better by helping out.

Helpless though they may feel, partners help immeasurably just by being present, providing physical contact and listening, allowing for and participating in the process of dealing with the strong emotions that cancer forces, as Barb Clabo wrote:

As always, after the initial shock, which could take a few hours--Glenn and I would start discussing it. This is one of the many ways in which Glenn helps me through this so much. He lets me get all my emotions out, whatever they are. He'll just hold me and let me scream, cry, rant or whatever. After I settle down, he'll let me tell him what I'm feeling and he'll give me his assessment of the situation. I just don't know what I would do without him.

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