Facing death can bring out best in people

[cougarnurse]

From The Patriot: http://www.pennlive.com/midstate/ind...g_out_the.html

The information isn’t sinking in.

The oncologist who just drained 1,000 cubic centimeters of fluid from around Sandy Eckert’s lungs is telling her that perhaps it’s time to cease her third round of chemotherapy for ovarian cancer.

“We need to concentrate on making you comfortable now,” the doctor gently offers.

“Really?” is all Sandy can manage.

The journalist, mother of two and grandmother of three thought she was about to be discharged from Harrisburg Hospital to return home and continue her two-year cancer battle.

Instead, she’ll soon be investigating options for hospice care.

It’s an overwhelming turn of events for anyone. But Sandy, 63, is particularly vulnerable.

She’s divorced with no immediate family near her Palmyra-area home. Her 89-year-old mother and a younger brother live more than three hours away in Ridgway. And her two sons are busy with families and jobs in far-away Texas and Washington state.

Yet Sandy Eckert isn’t alone.

A group of friends, whom Sandy calls her “angels,” has been by her side since her cancer diagnosis nearly two years ago.

They’ve organized 24-hour companionship following Sandy’s 2008 surgery so she could safely return home for a two-week recovery period.

Using an e-mail chain, the ever-growing group systematically arranges for transportation to and from every one of Sandy’s doctors’ visits and chemotherapy treatments.

And because two minds are better than one when it comes to understanding confounding medical facts and evaluating complicated treatment options, one of Sandy’s angels is inside the exam room for all of her medical consults.

Often, these duties fall to longtime friend Cynthia Tyger, a semi-retired nursing administrator from Hampden Township who acts as Sandy’s eyes, ears and chief note-taker.

Cynthia, 60, is by Sandy’s side for the final, surreal conversation inside Harrisburg Hospital. At some point during this life-altering medical discussion, the topic of time comes up.

How much does Sandy have left?

The oncologist answers, but Sandy blocks it out.

Perhaps her head is swimming from the devastating news, not to mention whatever drugs and chemicals are still pumping through her system from her treatments.

Or maybe Sandy just doesn’t want to hear because she hasn’t yet steeled herself for the implications.

Either way, it’s a good thing Cynthia is inside the hospital room with her friend.

Then again, where else would she be?

Cynthia’s the first person Sandy confides in when the family doctor discovers the mass in Sandy’s abdomen. She’s there when Sandy goes in for her first oncologist consult at Penn State Milton S. Hershey Medical Center. And Cynthia supports Sandy’s decision to seek a second opinion.

Now, Cynthia and a growing group of Sandy’s friends from church, her neighborhood and her life will be in her corner as Sandy’s fight enters its final rounds.

“She asked me to take this journey with her,” Cynthia says of Sandy. “I said, ‘I’ll go as far as I can. There’s a point where I’m not going to be able to.”

The final step will be Sandy’s alone, of course.

But for now, she has 37 friends, neighbors and acquaintances along with her as she prepares to enter hospice in late July.

This group has become her chosen family.

“My friends are all overachievers,” Sandy says with a proud smile. “So they didn’t leave me alone.”

Society tells us that the only fate worse than death is facing death alone.

Yet with rising divorce rates and families scattering to the wind, more people than ever might face this somber prospect. As the first waves of baby boomers enter their 60s, the odds of lonely ends only increase.

It doesn’t have to be this way.

Hospice officials and death and dying experts are increasingly seeing unconventional arrangements take the place of traditional biological families in end-of-life settings.

Often, these so-called chosen families defy expectations and flout traditional cultural norms.

“I am amazed by the number of guys who have developed a terminal illness and their former wives are their main caregivers,” marvels the Rev. Michael J. Scalzi, citing but one example.

As spiritual care and bereavement coordinator with Crossings Hospice of the Visiting Nurse Association of Central Pennsylvania, Scalzi has seen end-of-life support take many forms — from bitter divorcees burying the hatchet and friends rallying around one of their own when family isn’t available to gay couples buoyed by a deep reservoir of support within their own community.

But what is it about someone facing death that brings out the best in people?

“Maybe there is an aspect of what goes around comes around, but that’s not foremost in their minds,” says Scalzi, who’s witnessed the dying process during hundreds of home visits.

The real answer is simpler.

“It’s a bond between people,” he says. “The people who come, they’re just there. They don’t tell you what an inconvenience it was. They don’t talk about being put out. They’re just there. They’re present. They’re not there to get anything for themselves. They’re just there for the person who is dying and to help in some small way.”

And for as long as he’s been around home hospice care, Scalzi has seen very few left to face their final journey alone.

“Even people who are really rotten in life, they don’t get abandoned,” he says. “There is just a tremendous amount of forgiveness.”

Sometimes, families, especially siblings tending to dying parents, can crack under the strain of impending death and budding rivalries over anticipated inheritances.

The support of friends comes with few strings attached, and the care and comfort they provide often rises to the occasion.

“They don’t come with the same baggage that families do,” Scalzi says. “I’ve had hospice patients where there is a son and a daughter and they can’t breathe the same air. You don’t have any of that with these groups. There’s no jealousy, no history, no prejudices. They’re just there to give of themselves. That adds a whole different dynamic to the whole thing.”

Even when family members are deeply involved in end-of-life support, a network of friends can ease their burden and quietly help with whatever everyday issues arise.

Rarely do friends come to visit without bringing food. And if they hear of a plumbing problem or maintenance issue, it’s often quietly resolved without a fuss.

“These type of people are networked, so if the sink isn’t working or the TV’s out, the next thing you know, there are a couple of guys over the house fixing it,” Scalzi says. “It’s like angels walking in and out.”

Witnessing such everyday miracles and seeing people at their best is one of the many reasons Scalzi wouldn’t trade his job. To this day, he surprises people who assume his work with the dying is dispiriting and depressing by recounting story after uplifting story of simple triumphs, everyday joys and tender mercies.

“I see more good-hearted people of all ages coming out and helping in any way they can when it comes to something like this,” he says.

“One community where you really see people band together is in the gay community. They are struggling with spousal rights and access to medical information. But you are amazed with how many people come out and support each other. They are family. They really are family.”

And when the moment of death arrives, everyone present is given the gift of self-reflection.

“You think, ‘That’s going to be me someday,’” Scalzi explains. “It makes you take a look at your life and how you treat people and the nurturing you’ve done in your life. And you hope someday when it’s your turn, you’ll have friends who care enough to come and take care of you. It’s a prayer, really.”

[cougarnurse]

A support group emerges

Sandy Eckert’s support group begins with the instinctive reaction of a friend.

On a layover at the Cincinnati airport while winging her way back from a Hawaiian vacation, Cynthia Tyger powers on her cell phone.

There’s a voicemail from Sandy. She needs to talk. It’s urgent.

Cynthia redials her longtime friend and receives the life-altering news amid the din of the busy terminal.

“I have this abdominal mass,” Sandy tells her. “I need to see an oncologist.”

Cynthia’s reply is immediate.

“When’s the appointment? I’ll go with you.”

Sandy’s Angels take wing from there.

The first make-or-break moment comes in November 2008. Sandy is undergoing surgery to remove her tumor at Hershey Medical Center. The outcome will determine her prognosis.

Despite the high stakes, Cynthia can’t be there.

In an ironic twist, she’s with her husband, Joel Hersh, at Harrisburg Hospital. Having beaten colon cancer, he’s having his colostomy reversed.
Unfortunately, the news isn’t as positive for Sandy.

Surgeons are able to remove only 80 percent of Sandy’s cancer. Her fate is uncertain.

Cynthia gets the unsettling news just as the Harrisburg Hospital medical staff is preparing to wheel her husband to the operating room for his procedure.
She bursts into tears.

“I’m crying and the attendants look at me and tell me, ‘We’ll take good care of your husband. He’ll be fine’,” Cynthia recounts.
She recalls thinking, “That’s not the issue.”

Cynthia now knows that Sandy faces the fight of her life.

The only comfort is realizing that Sandy won’t go it alone. Sandy’s growing network, much of it rooted in the women’s group “QueenSpirit” at the Unitarian Church of Harrisburg in Swatara Township, will see that Sandy has support from all quarters.

Over the next 18 months, Sandy’s volunteer support group becomes a finely tuned system that weaves plenty of moving parts into a seamless net of compassion, companionship and care.

“Every time Sandy had a chemo appointment or a doctor’s appointment, it involved at least three people, sometimes four,” Cynthia explains. “Somebody brought her to the appointment. Somebody took her home, and somebody met her there.”

Typically, it’s Cynthia, with her nursing background, who is in the exam room alongside Sandy, notebook and pen in hand.

“I was the second set of ears, and I asked the questions Sandy didn’t ask. That was my job,” she says.

It becomes a well-oiled routine.

Along the way, serious cancer research is conducted on the Internet as Sandy and her angels weigh treatment options and attempt to pin down facts. At the same time, this heavy homework is leavened by irreverent cancer jokes told en route to rounds of chemo. Each joke teller tries to top the last in terms of political incorrectness and bad taste.

For the most part, Sandy’s spirits are high. She’s determined to beat her disease.

But when her blood work fails to pass muster and she’s forced to delay a scheduled chemo treatment, Sandy can get down. Doubts creep in.

Is the cancer growing? Is she fighting hard enough?

In these moments, Sandy needs a break.

As important as her angels are in supporting her battle, they also relish in whisking Sandy away on pleasurable distractions totally unrelated to her diagnosis.

Some of these light-hearted outings fall to Kate Quimby of Harrisburg. More of a casual acquaintance when she began shuttling Sandy to chemo treatments, Kate soon finds herself drawn to Sandy’s many interests.

“I enjoyed the time so much when I was driving her that we started doing things socially,” says Quimby, who, at 63, is Sandy’s age.

When Sandy mentions a movie at Harrisburg’s Midtown Cinema, Quimby doesn’t hesitate.

“Let’s get tickets,” she says.

And when the two get to discussing what a shame it is that the art collection at the Barnes Museum outside Philadelphia will soon be moving, they promptly decide that they positively have to see it.

That spring outing stands out as a golden memory.

“We would look at the art for a while, then we would wander around in his garden,” recalls Quimby, a cultural and relational communications professor at Messiah College.

“We were just oohing and ahhing over the art and the trees,” she says. “What food for the soul.”

The strong support of friends, coupled with two rounds of chemo, translates into triumphant news.

In January 2010, Sandy’s cancer goes into remission. There’s “no tumor activity,” her oncologist declares.

Sandy’s e-mail chain chimes with good cheer and well wishes. She and her angels revel in a hard-won victory.

“It was joyous — a celebration,” recalls Cynthia. “People were like, ‘Way to go girl!’”

As sweet as it is, the joy doesn’t last.

During a routine checkup later that spring, Sandy’s blood work comes back with a problem. Her doctor wears a look of concern as he prepares to check Sandy over.

The sterile paper on the exam table crinkles as Sandy lays back. The room is silent as the doctor presses on her abdomen. Without a single word being exchanged, Sandy knows. It’s the way the doctor’s fingers focus on a certain spot.

He feels a lump through her flesh.

The cancer in Sandy’s belly has reawakened. This time, it’s returned with a vengeance.

Tests results come back, and the news couldn’t be worse. The tumor has spread to Sandy’s liver.

Without hesitation, Sandy’s growing group of angels gears up for the fight of their lives.

[cougarnurse]

New definitions of family

The notion of a chosen family that defies biological bonds is nothing new to cultural anthropologists.

Jenell Williams Paris, professor of sociology and anthropology at Messiah College, says kinship is reckoned in vastly different ways around the world.

Anthropologists use the term “fictive kin” to describe how people who are not related by descent or marriage come to call each other family.

These ties can be as strong, or even stronger, than kinship based on blood or marriage bonds, Williams Paris says. What’s more, in societies where fictive kinship is recognized, respected and widespread, these non-biological relatives often have a say in end-of-life decisions.

The United States is not yet one of these societies.

Here, the law and medical privacy rules actively exclude so-called chosen family. Friends and non-married companions are considered less than “real” family, Williams Paris says.

But there are signs that even this is changing.

“In the U.S., societal definitions of family are shifting under our feet for many reasons, such as reproductive technology, gay-marriage initiatives and high divorce rates,” Williams Paris says. “It’s possible that, with respect to end-of-life decision-making, citizens could push for new definitions of family, or kin, that would allow individuals to have more say about who is legally empowered to make decisions on their behalf.”

For the time being, Americans wishing to include non-related friends and companions in their end-of-life journeys must take proactive, legal steps well in advance of a medical crisis. It’s the only way to ensure that non-relatives aren’t excluded by existing laws and medical privacy rules.

“If you’re past the point where you can no longer verbalize what you want, all your friends are out of luck,” Cynthia Tyger warns.

Thankfully, Sandy Eckert minded every last detail.

Her written instructions are exceedingly specific, down to the music she wants played and the literature and poetry readings she wishes recited.

And in the age of medical privacy, Sandy makes sure friends like Cynthia have the same legal standing and access to her medical information as her family.

In fact, it’s often Cynthia who gathers, interprets and relays the latest medical news to Sandy’s mother, brother and sons, all of whom are out of town.

Far from feeling excluded, Sandy’s geographically distant family members are thankful for the active involvement of Sandy’s friends.

“They’re a godsend,” says Sandy’s oldest son, Scott Marrone, 42, of Dallas, Texas.

“You do feel guilty because you can’t just hop in a car and be there. But you feel relieved because you know she has a friend network here and that someone is going to be with her and she’s not going to be alone,” he says.

To friends who witness the clear-eyed way Sandy anticipates and stipulates every detail, she stands as an inspiring example of how to meet death on one’s own terms.

“Sandy had the ability to make choices, and she chose wisely,” admires Kate Quimby. “She chose women who had something to offer, just as she had something to offer us. It was truly a give and take. She was a wonderful role model of how to make a good death. Sandy taught us to cherish life, but to let go with a good death.”

It’s a lesson for all.

“Everybody should have this,” insists Cheryl Vermey, formerly of Derry Township, whose friendship with Sandy goes back more than a decade.

“We’re born into a literal family, but we also have an opportunity to create family that we need around us,” adds the divorced 52-year-old, now living in West Chester with no family nearby.

“I know the five or six people I would call in a life crisis situation, and I know they would be there for me,” Vermey says. “When my time comes, I know there will be friends there for me.”

With millions of baby boomers in their 60s, the generation that redefined sex, drugs, rock and roll and divorce might be about to do the same for death.

“Absolutely, this is a trend,” Vermey insists. “The generation I’m in is going to be changing the conversation on death. The baby boomers have changed everything else as we’ve gone along. Witnessing someone’s final journey in life is a gift. To be with them and present for them is a gift.”

[cougarnurse]

A difficult realization

There’s one wish Sandy’s angels can’t grant her.

It’s late July, and Sandy’s third round of chemo is failing. Her belly is swelling with fluid. And the doctor is telling her that little more can be done.
In her hospital room, Sandy has trouble taking it all in. But she’s clear about one thing.

She tells Cynthia that she wants to go home. If she’s going to die, she wants to do it there.

At home, Sandy can count on hospice visits for her medical care. But any gaps in coverage and companionship will have to be filled in by Sandy’s team of volunteers.

For the first time since Sandy’s 2008 diagnosis, Cynthia Tyger hesitates.

Instantly, she recognizes the difference between coordinating rides for doctors’ office visits and staffing a home 24-7 while Sandy lay on her death bed.

“That was going to be difficult with the network,” Cynthia concedes.

Nevertheless, she puts out a request on the angels’ e-mail chain.

But the task and the stakes prove too daunting for the hodgepodge of volunteers.

“It was going to be patchwork,” Cynthia says. “I had visions of that patchwork coming apart at the seams. This wasn’t the time for that. You can’t be late getting there when someone’s dying and in pain.”

Cynthia must break the news to Sandy, who’s still reeling from her rapid reversal of fortune.

Even worse, Sandy still doesn’t realize how little time she has left. Instead, she harbors illusions of being cared for at her home for a year or longer.
Cynthia enters Sandy’s hospital room and gently broaches the subject.

“Sandy, do you remember what the doctor said about how long you have?”

“I think so,” Sandy replies. “Didn’t he say something around a year?”

Cynthia shakes her head.

“Sandy, you might not get to celebrate my birthday.”

It’s the end of July. Cynthia’s birthday is Aug. 18.

The news sinks in. Sandy wordlessly stares at her friend.

Cynthia takes both of Sandy’s hands in her own.

“We’re going to have to celebrate my birthday early this year,” Cynthia decides.

Everything is a treasure

Sandy’s room at the Hospice of Central Pennsylvania residence in Susquehanna Township is peaceful and woodsy.

A country girl at heart, Sandy relishes the blissful brushes with nature. A fawn visiting her window. Butterflies floating outside. A fat groundhog comically scampering up a hill.

“Do you know how funny a woodchuck looks when it runs up a hill?” Sandy asks in a faint, breathy voice, then chuckles lightly.

“I haven’t sat around and watched those things in years,” she says. “They’re hilarious. There have been some incredible things. The squirrels always trying to make it to the feeder, just scrambling for all they’re worth. They do get some food, too. The squirrels here are fat.”

Sandy takes it all in, delighting in life’s simple magic. Everything is a treasure.

When she’s not gazing out the window, her mind wanders episodically over her 63 years.

There’s no continuum. No plot. Just flashes of scenes, snippets of dialogue and images that seem real enough to touch.

The best thing is that the times Sandy is revisiting are uniformly happy ones.

“The rough times are done,” she says. “The positive things, they’ll live longer.”

In her memories, Sandy and her two young sons are taking their boat to a nearby stream. It’s a simple, everyday outing that the three used to take after supper in the spring and summer.

“With me on one end and the two of them on the other, we could carry a canoe,” she recalls. “We had an hour or so after supper. It was something we could do, a mother with her sons.”

Her boys are fathers now with kids of their own, but Sandy still worries.

She wonders how they’ll handle losing her.

“My oldest son was very afraid that I was afraid,” she confides. “I told him I wasn’t. That was hard for him to take in. I told him, ‘I don’t know what happens, but when I die, I’ll know all. I’ll know everything then.’ He didn’t say a lot, but he was taking a lot in.”

Sandy often says mothers lose all power when they can no longer kiss their children and make everything better. But her words comfort her son Scott.
He finds peace in the gentle calmness of her voice and in the fierce conviction in her eyes.

“If it were me in there, I would be totally afraid of what came next — or if anything came next,” Scott says. “She seems to me to be prepared. How she did that — how she could do that — is still a mystery to me. But it really soothed me.”

[cougarnurse]

‘I want more’

Sandy might accept death, and she absolutely does not fear it.

But she’s not ready to die.

This isn’t the way her two-year battle was supposed to end. She’d been savoring life’s sweet second chapter following her 2001 divorce. And she’s been absolutely determined not to let cancer loosen her new lease of life.

There’s simply too much to do, to see, to experience and to write.

She’s a journalist who contributes freelance articles to The Patriot-News. She’s a world traveler, a nature lover and a catalyst who spurs friends to turn idle talk of second careers and life changes into action. She’s a grandmother who yearns to see her three grandchildren grow up and graduate.

“I want more,” Sandy says, her flute-like voice intoning resolve inside her softly-lit hospice room.

“I want more time with my grandkids, with my sons, my daughters-in-law, my friends. I want more time at the movies. I want more time to laugh. I want more time to cry. I want more time even to have colds. I don’t care what it is, I want more time. I don’t care if it’s greedy. I don’t care if I don’t deserve it. I want it.”

Despite the doctor’s prognosis, Sandy makes it to her friend Cynthia’s Aug. 18 birthday. But it’s not a festive occasion.

Sandy’s on oxygen and pain medication, and she sleeps most of the time. Fluid build-up badly distends her belly, leaving her in constant discomfort.

Because of her deteriorating condition, Sandy’s circle is down to her son Scott, who has flown in from Texas, and her closest angels — Cynthia, Megan Borror of Susquehanna Township and Carlotta Cheryl Capitani of Harrisburg.

Yet even in these waning days, there are little joys.

Sandy’s three friends carry out the wishes Sandy so meticulously recorded.

They play the African and Native American tribal music she relished. They read her favorite poems and a passage from the novel “The Prince of Tides.”

Sandy has selected the scene where the Southern mother in the story takes her young children to a South Carolina dock at precisely the moment when the sun is setting in one direction and the moon is rising in the other.

The mother unveils this everyday event to her children as if it’s some rare mysticism. The wide-eyed kids’ mouths gape in wonder, and the youngest daughter exclaims, “Oh, do it again, mamma. Do it again!” — as if mothers controlled the sun and the stars.

For Sandy, the passage has always been a reminder of those precious, fleeting days when mothers have all the power in their children’s eyes. It speaks perfectly of the symmetry of endings and beginnings. It gives her peace.

“So many times, I’ve turned back to that,” Sandy says.

‘The way she wanted it’

Sandy Eckert dies at 7:31 p.m. on Sunday, Aug. 22.

Family members say their final goodbyes over a phone held to her ear. Only her son Scott and angels Cynthia, Megan and Carlotta are in the dimly lit hospice room.

The three women sing the song, “We Are Sisters on a Journey.” They light candles. And the room smells faintly of lavender, Sandy’s favorite.

When her heart beats its last, Sandy’s friends place a white silk scarf around her neck. Then there’s silence.
“Her death was the way she wanted it,” Cynthia says.

Sandy’s friends made sure of it.

[cali510]

Touching story. Personal experience is that nobody in my family was informed that my Mom had cancer. She passed away and then we found out, it was written on her death certificate. That we were kept from seeing her more often in the end and there were no final goodbyes grates on our sensibilities, but I had to remind my siblings that there are places that will keep the family in the dark if it is possible and it suits their agenda.

[cougarnurse]

Ah, sh*t, Cali; sorry to hear about this. Of course, your Mom knew the dx, right?

I was near tears posting this thread. In my years of nursing, have seen some patients who do NOT want family 'to worry', etc., and have kept things from them. The reverse is true, also. Heartbreaking all the way around.