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A petite woman looking younger than her 61 years, June had short-cropped dark hair that gave her a



Published: Sun, September 15, 2002 @ 12:00 a.m.



A petite woman looking younger than her 61 years, June had short-cropped dark hair that gave her a boyish look. Her hair was still growing back after a long round of chemotherapy.

June smiled, a bit shyly. Her gums looked painful, red and tender from the leukemia that was ravaging her body. Yet the outward evidence of the disease was only a momentary distraction as a smile lighted her face.

The nurse left after talking with June about how she was feeling and how her medications were working.

June and I sat side by side on a small couch with her sister hovering protectively across the room. Neither June nor Judy quite understood my motive for being there. I told them simply that I wanted to write a story on what it's like to live with dying, to live with a terminal illness.

So, we sat in quiet conversation for about an hour. During that time June spoke in detail about her illness, the treatments and the ultimate diagnosis. It seemed a comfort for her to repeat her story to me.

In August 2000, doctors diagnosed June with myelodysplasia, a bone marrow disorder similar to aplastic anemia that soon advanced into leukemia.

Treatment

June recounted for me the details of two separate monthlong stays at Cleveland Clinic between January and October 2001 for a trial treatment that included two & quot;mini & quot; bone marrow transplants, chemotherapy and numerous blood transfusions. She showed me the transfusion tube in her chest.

June admitted that she was scared but ready to beat the odds. She recalled, with a bit of an introspective grin, how she packed a curling iron and hair products for her stay at the clinic.

She was determined that she would be one of the few not to lose her hair as a result of chemotherapy. But she did, although seeing so many other patients going through the same thing gave her some perspective.

She was not a candidate for a standard bone marrow transplant because of her age.

This would have included incredibly strong blasts of chemo and radiation therapy to kill bone marrow cells before they could be replaced by a donor's cells.

So, June's doctors treated her with a promising new procedure called the nonmyeloablative transplant or minitransplant, with her brother as the T-cell donor.

Instead of relying on high doses of extremely toxic chemo and radiation therapy to do most of the tumor cell killing, the minitransplant approach relies on the cell-killing activity of the grafted donor T-cells.

Rather than killing bone marrow cells, the new minitreatment simply suppresses the immune system of the patient for a while, so that the donated bone marrow cells are not rejected and can graft successfully. The procedure uses far less toxic dosages of chemotherapy than a standard stem cell bone marrow transplant.

The transplants came so close but didn't take. June cried quietly, remembering how at one point in her treatment, 98 percent of the new cells took. She wondered why all the cells didn't graft when they were so close.

June was grateful to her brother, and he was glad to have been able to help. But they never spoke about the fact that the transplants didn't work.

In October 2001, June was told that the second minitransplant had not worked and that a standard bone marrow transplant was not possible. There was nothing more they could do.

Her physicians suggested that she contact hospice. She would probably not live until Christmas.

June was devastated.

"You know you're going to die," she said, "but you don't know when."

Expectations

The family set up the Christmas tree and celebrated early so that they all could be together one last time. But Christmas passed, and the New Year, and now Easter was upon us.

June's sister thought she might even make it until her birthday Aug. 10. As things turned out, she was able to celebrate her 62nd birthday on that date.

June was living with dying every day.

My interest was precipitated by a book from Public Affairs Press, "What Dying People Want." Research for the book was funded in part by the Project on Death in America of the George Soros Foundation.

The book recounts the stories of people who are "living with dying." But, says author David Kuhl, M.D., the book's primary message is to remind its readers that "people who are dying are still living."

Propelled by the book's title, I asked June the question, "What do dying people want?" Her immediate response was to tell me what she did not want.

"I just don't want to be a burden. I don't want anybody to have to take care of me like that. I'd rather die right now."

I asked the same question of professionals working for Hospice of the Valley. And I asked friends and associates who had lost loved ones as a result of a terminal illness.

Dr. Eric Chevlen, medical director for Hospice of the Valley, told me, "Dying people want what living people want. They want to be valued."

The Rev. Jay Eastman, a former football player for Canfield High School and now a full-time chaplain at Hospice of the Valley, agreed with Dr. Chevlen.

The Rev. Mr. Eastman, who some affectionately refer to as "irreverend" Eastman, spoke passionately.

"When people are sick before they die, they don't want to be invisible. They want dignity. They want to be heard. They want people to care about them. Dying people want their grief to be validated."

He said some people just want to yell out, "Yes, I'm dying. Does anybody out there care?"

"When people are dying, their focus is a lot different," Eastman continued. "They look out at what's going on in the world. People are talking about snow, and the dying person says, 'Look, I'm dying. Does anybody care?'"

Pausing for a moment, he said, "They don't give an iota about the last election. They just want to know, 'Does anybody care?'"

Say something

When people, even loved ones, don't know what to say, they often say nothing, making the sick person feel invisible. I asked June if she felt she had become invisible to some people.

"It happened with one friend," she related. "I thought I might have done something wrong." I suggested that maybe the friend just didn't know what to say. June reflected a bit and thought that maybe she would have done the same herself before she got sick.

I probed her a little further, "What can people say to the dying person?"

Just simple things, she said, like, "Keep up your spirits." "Keep going." "Don't give up." That would be comforting, or so it was for June.

As a counter to that experience, some of the great pleasures June had during her illness were the calls from another friend.

"My girlfriend calls me every day except on weekends because she knows my family is here. ... She even called on her vacation. That keeps my spirits up, keeps me going." I asked what they talked about. Mostly things about living -- children, friends, things going on.

Ilona Roth-Cohn is a social worker at The Center for Behavioral Medicine at Forum Health. Her mother, Sue, died at age 52 from breast cancer that had metastasized to her bones.

Roth-Cohn also brought up the issue of invisibility of the dying person. Although her mother received great support from friends and family, Ilona said that there were those who wouldn't even talk to her mother, as if they were fearful they would catch what she had.

In a way, Ilona said, "Sick people become their illness." But most of the time, the dying person doesn't want to talk about the illness. "They are living it. They need other things."

Mort Small, a retired Youngstown toy salesman with health problems of his own, including Parkinson's disease and painful spinal stenosis, understood from his wife's experience that the dying person wants the simple things they enjoyed in life.

His wife, Ruth, died within a matter of weeks after diagnosis of an inoperable brain tumor. She had been a nurse who was always graciously "on call" for friends and relatives.

And she loved to read. There were always four or five books piled on the nightstand next to the bed. Her illness affected her eyesight, and she was soon unable to enjoy that simple pastime. That was very difficult, Small said.

But Ruth remained gracious even throughout her illness. She died on her 77th birthday, July 20, 2001.




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