Both Sides Now

The same day Kathleen Neal had her final chemotherapy treatment, her husband, Jim Lutz, was diagnosed with a brain tumor.
The same day Kathleen Neal had her final chemotherapy treatment, her husband, Jim Lutz, was diagnosed with a brain tumor. (By Lois Raimondo -- The Washington Post)
By Kathleen Neal
Special to The Washington Post
Tuesday, November 22, 2005

We were laughing so hard that I almost fell down. The nurse had presented me with a flat garment that had five armholes.

"Here is your gown," she said. "Let me know when you have it on."

That was the problem. With no instructions, my boyfriend and I were coming up with all kinds of ways to drape the cloth on my body. Each rendition resulted in more giggles and speculations about who had designed the thing and what they were smoking at the time. It was the kind of laughter you got as a kid, when you couldn't stop because it just kept bubbling up from somewhere deep inside.

The lady in the next cubicle was sobbing hysterically. It was 6 in the morning and we were both preparing for mastectomies.

I think she was mourning her breast. I understand that. Society has made a woman's breasts important. They supposedly define our sexuality. The bigger or perkier they are, the more desired we are as women. To cut one off is to lessen you as a woman. I don't buy it, but a lot of people do.

I was celebrating the beginning of treatment that would obliterate my second breast cancer. Having surgery is not my idea of a good time, but I was eager to get it done, dive into chemotherapy and then be well again, as I had done 12 years before.

But nothing is ever as easy as we plan. My positive attitude would be tested far beyond my imagination.

My surgery -- mastectomy and simultaneous breast reconstruction -- did not go as well as planned. Because my first cancer had been treated with radiation in addition to a lumpectomy and chemo, my skin, although it looked all right, was damaged. It was paper-thin and crumbled easily.

Worse, I was released from the hospital with a raging, drug-resistant staph infection that ultimately resulted in a two-year battle to get well. With 22 hospitalizations and seven surgeries, I began to feel I would never be free from being a patient.

I am a pretty tough person and try to keep a positive attitude. That and the support I received in boatloads are what kept me kicking and alive. I was grateful to let people help me, pray for me, be with me in the down times and laugh with me when we recognized the absurdity in a situation. One particular person was the main reason I could smile, make jokes, keep working and deal with the pain and aggravation.

I met my significant other a year before my second cancer surfaced. We had an affectionate, close relationship that grew stronger every day. He treated me like the most beautiful woman in the world. I felt treasured, valued and deeply loved.

But after 14 single years following my divorce, I didn't know how to let someone take care of me. I had always been the one to do everything, and suddenly I was being pampered and nurtured. It took some time to get used to.

We settled into a comfortable relationship, neither of us eager to get married again. The future seemed brighter than it had in years. Then came the day I found a lump, on the site of the lumpectomy years before.

I wasn't worried at first because I assumed it was scar tissue. To be absolutely sure, I went to the doctor -- "Papa," we all called him. He was a crusty, no-nonsense older guy who ranted that "if they were cutting off men's balls, you'd better believe somebody would have found a cure by now!"

He did a needle biopsy right then, told me not to worry and sent me on my way to "get it on with your man." Papa was never politically correct, something that made his nurses crazy. It didn't bother his patients because he had saved most of our lives.

It was cancer, not metastasized, but a completely different tumor. Thus began my journey through two years of what could have been hell had it not been for my man.

He went to every three-hour chemotherapy session with me. He was at the hospital every time I was admitted. He changed bandages, made sure I took my medicine, brought me milkshakes and told me I was a very sexy bald lady. It the middle of it all, he proposed and we were married in a lovely church wedding with all our friends and family. He didn't seem to care that the bride had no hair.

Two days later, I was back in the hospital having emergency surgery related to the staph infection. He never complained about having to cancel a very expensive honeymoon.

Worse Things Happen

A year after our wedding, I had what we both prayed was my last surgery. It was September 2004 and we made big plans for a cancer-free 2005. It was celebration time.

The day before Thanksgiving in 2004, he stood in front of my desk in my home office and simply said, "I have a brain tumor."

Emotions flooded my brain and my body went limp. How could it be?

My first response, after recovering from the shock, was to remind my better half that it could be benign. Ironically, a neighbor had just had surgery for a large benign brain tumor.

It wasn't benign. It wasn't even nice.

His tumor, though small, was a rare one. With some help from a doctor relative, he was able to see a brain tumor expert at Johns Hopkins. His first appointment in Baltimore was on the same day I was having my last appointment in New York at Memorial Sloan-Kettering Cancer Center. We do like to do things in a tidy manner.

After the biopsy and consultations, he started seven weeks of daily chemotherapy and radiation. When the treatment caused major swelling in his brain, he went on steroids. He wasn't always pleasant on steroids. That is when I began to see that, for me, being the patient was much easier than being the caregiver.

All in the Attitude

The chemo didn't work. The tumor grew and a second one appeared. Panic once again set in for my dear husband. I prayed while he "what if'ed" and worried.

The experts scheduled brain surgery, and he put the house on the market. He went back on steroids and I tried to remember that I am an optimistic person.

My positive attitude usually serves me well, but I was being deeply tested. The lesson I had to learn on the outside of cancer is that optimism is not transferable. When he did not become nauseated after a chemo session, I would suggest that was a good thing and we should celebrate. He decided the doctors weren't giving him a high enough dosage of chemo and he was going to die in four months. Every positive idea I offered up was met with, "Yes, but. . . . "

I also learned that being a caregiver with nothing to do is the worst kind of frustration. My sweetheart couldn't eat, so cooking did no good -- in fact, the smell of cooking made things worse for him. When he was on steroids, he was hungry all the time, but only for specific things (peanut butter-and-jelly sandwiches), and those foods might switch every few days.

He didn't want to be held because his skin felt "creepy" and he didn't want to talk because the medicine made him cry a lot. Since I'm being entirely honest here I can admit that I sometimes snore, which kept him awake, which made him cranky the next day, which was my fault.

You get the drift. My job was to be there for him, but to stay out of the way.

This lovely man who had taken such tender, complete care of me either didn't know how or really didn't want to let someone take care of him. He didn't want to be told, "It will be all right," because he believed it was not going to be all right. He didn't believe prayer would work. God was punishing him and being mean to him.

We did go to church, mostly, I think, because I go to church. As part of his continuing desire to take care of me and make me feel better, he also talked with the minister about why bad things happen to good people. That seemed to help.

In a dramatic turnaround from his "I'm going to die" attitude, one Sunday he let the congregation at church pray for him openly and lay healing hands on him. I was surprised and speechless. I didn't know where this change came from.

Prayers had been said daily since his diagnosis, but he dismissed them as merely a nice gesture. Later he explained that as time went on and so many people, many of them strangers, prayed for him, he began to "feel" the prayers lifting him up and over the cancer. That special Sunday, before the surgery, he was finally ready to accept and believe in the congregation's gesture. For me, that in itself was a miracle.

Brain surgery day arrived. At 5:30 in the morning I took my husband into Johns Hopkins Hospital to have a part of his scalp removed so a doctor could cut into his brain. If a friend hadn't arrived with a bottle of wine and a backgammon board, I don't think I could have survived the next 6 1/2 hours.

He fared well, surgically and otherwise. He woke up in intensive care joking, hungry and ready to get up and walk around. Two days later we were home. Less than a week after surgery he insisted on going to church to let everyone who had prayed see how well he was doing.

It's still a long road to complete recovery -- and as we cancer survivors know, we dare not think of ourselves as "cured" -- but his prognosis looks good.

Learning the lessons of cancer from inside and out hasn't been easy. I'm sure there are more challenges to come.

What I know so far is that when I had cancer, I was in control. I had control over how I reacted to what was happening to me. I made the decision to try a positive approach to my illness, looking at the chemo as my army that was fighting the disease. I was in charge of choosing when to call medical providers about a problem and if and when I needed to head straight for the ER.

When the love of my life had cancer, I had to understand that I had no control. Sometimes, when his tumor decided to take charge, even he didn't have control. I could suggest he needed to call the doctor when he was feeling "funny," but I couldn't make him do it. I could assure him that everything was going to be all right, but I couldn't make him believe it. There were no bandages to change, no comfort food to prepare that would ease the fear, and no particular nursing skills were needed -- except maybe patience with the patient.

What it boiled down to was to accept that true love meant not trying to force my way of coping on my life partner. I had to trust in his ability to arrive at hope and peace with his cancer in his own way.

In the end, it turned out we didn't have to take identical paths through cancer's labyrinth. But we both made it through, and we're together.

Kathleen Neal, a writer and consultant, is author of "Non-Profit PR: If Charity Begins at Home . . . " Comments: health@washpost.com.


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