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Dealing with the Ups and Downs of Illness

The following article is excerpted from Chapter 7 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.

Many people pride themselves on their independence and self-control. Acknowledging emotional distress can be very difficult for them, as it carries with it a sense of personal failure. It's important to remember here that finding out that you need emotional help and support does not mean you are weak or that you have something wrong with you psychologically. All it means is that you are a human being in crisis--and sometimes it takes a great deal of strength to admit this and do something about it.

Many of the people I interviewed were brave enough to be honest about the despair and terror they felt at times. Barb Clabo, struggling with failed treatments over several months following a Stage IV diagnosis, was candid about her reaction after learning the treatment hadn't worked and the tumors in her liver were growing:

Will I ever receive any good news? I kept my composure--just a few tears--and a little anger until I reached the car and then again let loose. Cried all the way home with bad news for Glenn. After arriving home I felt a feeling of being trapped. I kept pacing and crying, not knowing which way to turn. It was awful. Taxol was supposed to work. I was having such a good week of feeling good after having been feeling so bad for so long. And then this! Up and down--Up and down--It is really draining.

Then on CAF, when her tumors began finally to shrink, Barb had trouble tolerating the treatment, winding up hospitalized and in isolation. Each time, as the effects of her treatment weakened her physically, she felt as if her emotional resilience was tested to the breaking point.

I feel like I'm slipping into the illness experience more and more, and I am so very frightened that I might disappear into it. During treatments I sometimes feel as though I am sinking in quicksand. I get in up to my neck and the last minute I get snatched out. I wonder how many times this can happen successfully without sinking all the way.

Kathy Stone was able to be philosophical about the emotional ups and downs she'd experienced in the two years since her diagnosis:

I do know that I've shed a lot of tears, I've yelled some and even screamed with frustration.... Yes, I think it was always frustration, not rage that made me scream...and there were/are times I've felt like my heart was going to literally break in two.... I've felt suffocated trying to "hold" in tears and I've cried with all my being and soul at other times. Most of the time I attribute the tears to the medicine and the effects of chemo and the "mental" imbalance it can throw a person into. My husband and I laugh now and say it's the medicine when I'm having an especially emotional trying time...but we don't just laugh it off either...we both know that those "mental" emotional chemo times are sometimes the hardest to other times they are a welcome relief.

But then Kathy's mother died, and her own pain got out of control for awhile and there were several trips to the hospital, followed by days of depression as she struggled with her intense distaste for "being hooked" on the pain medications:

I guess I need it for pain, I just hate the thought of being doped up all the time and I still have the nausea. The only difference is I've found myself in depression and having anxiety attacks, which is just not like me. I can hardly find a thing to smile about, and yet I have instance after instance of things I should be smiling about…. I just seem to cry most days. I hope it is the medicine and things can get worked out…. It is a very frightening feeling when it happens.

One thing that disturbed Kathy deeply was the sense of social isolation she was beginning to feel, so one night she asked Chuck to take her to a community fund-raiser for leukemia:

I talked my husband into taking me down for just a few minutes in order to buy raffle tickets, etc., and do our part for the "cause." I guess I still want to feel a part of things. When I walked in everyone seemed really happy that I had come down, but when we said we couldn't stay, the owner of the place (someone whom I've always felt to be a good friend) turned real cold and said, "Kathy, you have become a hermit and you aren't any fun anymore…why did you even bother to get up out of your sickbed to come down…so you could make the rest of us miserable?" …then she laughed…because she thought she was making a funny. Most of the time, I would have laughed too, but all I could do was bite my lip, toss my tickets on the counter and tell her I hoped we never had to change places…she wouldn't find my spot a whole lot of fun and I left. I'm afraid I made a fool out of myself for one thing, but more than that I was really hurt by her remarks and that bothers me. I feel like I'm not only becoming a "hermit" as she said, but I'm becoming too sensitive and I don't want to push people out of my life and become surrounded with my illness.

"I felt I was sicker emotionally than my psychiatric patients," confessed Pat Leach, who worked as a psychiatric nurse, looking back at the early days after her first recurrence.

A cloud hung over me, constantly. One day at work, I felt a slight pain in my lower back. I thought I'd lose control. I got nervous and panicky. I thought "I have to get out of here." I did some deep breathing, talked to myself--the pain went away. I'd do well for a few days then I could feel myself going downhill--that sinking feeling in my chest, thoughts of death. I saw a lady at the store with her grandchild and thought, Will I ever have that experience? I talked to my immune system. Sometimes my coping mechanisms would work quickly, sometimes it would take awhile. I've always been very open with everyone about having breast cancer. I learned who I couldn't be honest with--I was bitter at first because a few friends avoided me. They couldn't handle negative reports, but I have so much support that I didn't need them. But we remain friends--superficially, unfortunately.

As Pat struggled with one recurrence after another, she also felt a sense of estrangement, and anger at others.

Hearing I had breast cancer was one thing--hearing I had mets was another. I mentioned my labile mood (with depression often present). I'd get very angry--the old "why me." At times I didn't want to be with anyone but my immediate family--I felt and sometimes still feel different. Chris and I attended an anniversary brunch about two months after my diagnosis with mets, and I sat there thinking how different I was from everyone else there--I was sick, I wasn't sure of a future, I had to endure suffering--and I hated everyone else for the "good life" they had.
I've become very impatient over the years with other people and their complaints. "How dare they complain to me?" I usually get over it and become my old supportive self. I want to be the one to be there for my family and friends--I hate always being on the receiving end. Sometimes I feel so inadequate--and yet I know how much I'm loved and how lucky I am.

Like many other women, Pat also worried constantly about the ways in which her illness affected the people she loved most:

It is illogical, I know, but I often feel my family would be better off without me, that it would be better for me to die quickly so they don't have to suffer. I'm glad to be alive but when I don't feel well, my thinking always focuses on this. I've even thought of suicide--overdose--but I couldn't do that to my family and I don't have the courage. I definitely ride the roller coaster. My mood was getting so labile that I recently started an antidepressant. It has helped. I have scans on January 22, and hope for a report that at least says no new mets and the old ones haven't grown.

Pam Hiebert, when her cancer came back after a three-year remission, also came to the point of recognizing she needed some help.

In desperation, having spent almost an entire weekend in misery and condemning my partner, the very person who is such a stable, positive force in my life, I called Ralph to obtain antidepressants. The new drug (Paxil) worked within a few days and vastly improved my mental state and quality of life. I don't like adding another drug to my daily medication routine but the physiological changes occurring by my use of this hormonal drug are something I must consider as another part of working with this disease. As my dear friend Gilda said to me, "Give thanks you have something that actually works. You'd be much worse off without it."

It's common for people in this situation to long for normalcy and resist treatments that make them feel "medicalized" or dependent. PJ Hagler commiserated with Kathy Stone about not wanting to take medication for depression.

I understand how you feel about meds. I have tried to just feel "normal" or free from all medical sensations myself. I hate meds. I have fought them for so long and have to admit I finally agreed to take Zoloft. I hate to admit it because I want to do this on my own but I do feel better. I like to think that I can do this by myself sometimes. I hate to admit any weakness in myself and part of that to me is giving into meds. I am trying to fight this stupidity. I can't do this on my own. That's what the meds are for. I have had this dumb morphine drip for over a month now and I really know my limits with pain management. I know I need it and I was getting so depressed and low on energy that I trusted the oncologist who has not misled me yet and agreed to the Soloist. I like to think that I at least made the choice on my own as to take it or not. If it helps I will give it a try.

Kim Banks recalled her own struggles with depression, and offered some of her strategies for coping:

When I was sick from the chemo and all alone at home, I wrestled with the demons of depression and hopelessness, daily. I took an antidepressant during those times which helped me from dropping into one of those deep depressions. That had happened the first time I was on chemo and it really scared me. At that time I didn't want to get out of bed and didn't want to experience the daily pain and haunting worries anymore. I had lots to live for, but at that moment it was hard to remember those things.

The times when I was very depressed, I would force myself to get dressed and go for a walk, no matter how sick I was or how miserable it was outside. I wouldn't be skipping back home, but the walk usually broke my chain of thought and lifted me out of that dark hole I felt I was in. I would remind myself that if I could just get through this minute and then the next, I would ultimately feel better. So I'd concentrate on the minutes and pretty soon an hour had gone by and slowly, I realized that I felt a little better.

There were times when I felt especially vulnerable and learned that I had to avoid people and situations that I thought would pull me down. I decided that if I was going to beat this, I had to make myself number one for a while and focus on what was going to make me better. It's hard for women to be selfish, but we've got to be in order to get better. We won't be able to take care of anyone, if we don't take care of ourselves first.

Lisann Charland also found that paying attention to her own needs was crucial, and sought the help of a therapist to do so:

I had to find a way to conquer the fears and loneliness I felt, due to the seriousness of this metastasis, as well as learn ways to improve my life. In parallel, I sought a psychologist who helped me deal with my fears and pain. I learned to put Lisann first, deal with my fear of death and dying and the loneliness I felt with my family so far away.

No matter how much progress I feel I have made in accepting death and dying, the fragile state of my mind becomes evident when I lose members of my support group, or friends to cancer. However, the nightmares are not as bad as they used to be. I have also learned to choose my words carefully when relaying test results to my husband, who suffers from depression at times, and to my family. When they are in pain, I feel the pain, and then have to work hard to get rid of the guilty feelings of being a burden to them.

Some days, I feel like I am "untouchable." Other times, I really feel the loss and pain of living with cancer. I react differently than I used to, and recognize that everything happens for a reason, and I always look for the good side of things. My personality is such that you make the best of a situation, and don't waste time--and move on.

I am fortunate that the low days are very rare. I get mild anxiety pains after routine checkups, which are easily handled by a good cry or a good talking to myself that I will handle what comes my way accordingly, and by taking a pro-active role in obtaining the results.

I have accepted losing the body parts and the scars and the limitations set on me physically, but I will not lose my sanity. I am more determined now to survive than I have ever been before.

Though inclined to approach life in a controlled, rational, problem-solving manner, Sharon Multhauf felt she had finally learned the value of getting in touch with her emotions, despite the sadness she found inside, as she shared in this poem:

My Heart Knows

Inside my head, I talk of life's march onward.
Inside my heart, I sob and mourn my youth.

Inside my head, I analyze and measure.
Inside my heart, I cling to hidden truth.

Inside my head, the options stand before me.
Inside my heart, the choice dissolves in strife.

Inside my head, I grasp my heart's awareness:
I've lost the open-endedness of life.

Offsetting the emotional traumas she experienced as she dealt with her escalating illness, Mary D'Angelo discovered an increasing intimacy with her husband:

I've had numerous times of overwhelming grief, usually when I get bad news. This is characteristic--it always seems like I'm alone--that's why I don't like to call for counts, because I know if they're not good, they're going to depress me. So sometimes, I have Charlie call, or I just wait for the next month.

When Charlie comes home, I'll just become hysterical, and we'll hug each other. I'll just break down and let it all out, but only with him. He hugs me, and then it's okay, because he accepts what I'm feeling: "Yes, this is happening to you, and I'm here and I'll be with you. We will get through it together." And then, there's no anxiety. There's still sadness, but it seems to go away almost magically with his love, because whenever I'm really upset about being ill, or the news is bad, that's when he comes, well--crashing in, almost--with this bear hug of love that you can never weaken or not get in touch with. So it's always at the saddest moments that you get these great rushes of love. This intensity that you know is there, but you don't actually viscerally feel at other times.

With wry good humor, Jenilu Schoolman expressed some of the frustration she experienced, as a psychotherapist, preparing her patients for her loss:

On occasion, I felt angry and put upon. "It is bad enough," I would mutter to myself, "that I have to deal with my own death. Now I have to help others deal with it too." But since I've never allowed my patients to indulge in long periods of self-pity, I kept my own fairly short as well.

However, the pain would come unbidden and overwhelm me, and I would cry. I soon realized that twenty minutes of crying at one time is sufficient, and I learned never to let myself go on crying; enough is enough. After a while, pain turns to self-pity and all that gets you is a headache.

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