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Family and Friends is my everyday journal. Captain's Log is where I pontificate on religion and politics.

Monday, December 15, 2008

Penni's Story

From Dallas Morning News: 12/15/08

Baylor team helps families face death together 

12:15 PM CST on Monday, December 15, 2008

By LEE HANCOCK / The Dallas Morning News

Sonya Hebert / DMN
David Bourque stands next to his wife Penni to make sure she is comfortable as she nears the end of life.


LIVING UNTIL THE END

Janet St. James reports


We can't beat this, David Bourque thought, staring at ghostly X-ray images of his wife's ovarian cancer.

They'd rushed 60 miles the night before from their home in Canton, Texas, to Baylor University Medical Center at Dallas. His wife, Penni, writhed with a bowel blockage as their 8-year-old, Michelle, sat wide-eyed in the back seat of their Pontiac Vibe.

Mr. Bourque tried telling Michelle that her mom might not make it. The little girl set stuffed animals and a purple-and-orange squirt gun on her mother's emergency-room gurney like talismans.

The Bourques were medical people. Mr. Bourque, 44, was a pediatric ICU technician starting nursing school; Mrs. Bourque, 45, was a pediatric respiratory therapist. They couldn't kid themselves, but it wasn't clear how much their daughter understood.

They'd tried to spare her, and sensed that Michelle was trying to protect them, too. They all needed help to get through what was coming. But nothing else could happen as long as Mrs. Bourque was trapped in agonizing pain.

At 10 a.m. on a Wednesday in June, Dr. Roberto de la Cruz of the palliative team came to the glass-fronted ER bay where the family had spent the night, sleeping on a gurney, cot and chair. He checked Mrs. Bourque, who was heavily sedated, and then took her husband to show him the X-rays.

Mr. Bourque had the quiet wariness of a man who'd taken hard blows and was bracing for more. They'd endured ovarian cancer nearly four years, longer than most women survived it. Married 15 years, he and Penni were soulmates.

Mrs. Bourque's tumors had caused her first painful, inoperable bowel blockage in summer 2007, as they drove to New Mexico for her father's funeral. Cancer's cruelty enraged Mr. Bourque, killing his father-in-law with pancreatic tumors and sending his wife to another hospital instead of her father's burial.

From what Mr. Bourque read, she should've been dead 90 days after her first blockage. But she somehow got through, saying in her childlike voice that she just kept swimming -- like the plucky fish Dory in their favorite movie, Finding Nemo.

TDMN
Kelly Fuller (left) and nurse Min Patel (right) help patient Beverly Freeman sit up in her bed at Baylor University Medical Center.

After a second blockage last April, Mrs. Bourque's oncologist called in Baylor's palliative team. Dr. Robert Fine, the team leader, had talked alone with Mrs. Bourque and then sat down with the couple.

"Penni understands that her disease isn't going away, barring the miraculous hand of God," Dr. Fine told Mr. Bourque in their first long meeting. "She understands there is a future for you and your daughter that doesn't include her."

Michelle needed special guidance, he said. "You guys are still the parents, but you've never been through this before. And how we help the children of terminally ill parents is very important, even if you have a few years left. I don't know how much time you have."

Mr. Bourque pushed back. Why the dramatic change? His wife's oncologist had spoken only of hope and chemotherapy.

"We're getting a mixed message," Mr. Bourque said, his voice quiet but pained. "What's going on?"

Dr. Fine responded carefully. "I hope you perceive me as open and honest and not mincing words. I use the 'D-word.' When I was a young doctor, you never said death was coming. It was a taboo. You never had the chance to say goodbye. You never talked to the children. You never treated pain well."

He hoped they would get more chemotherapy, too, he said, but it could only buy time -- not a cure. And medical data on terminal cancers suggested that a scorched-earth battle might do them more harm than good.

"It may feel mixed," Dr. Fine said. "But my hope is for quality of life."

The Bourques had always feared that ovarian cancer was a death sentence. "But I was trying to push that away," Mrs. Bourque told Dr. Fine.

"I'd like you to go toward that for a while -- for your sake, for your husband's sake, for your child's sake," he gently responded. "So you can plan."

Palliative nurse Min Patel visited a few hours later and, for the first time, Mrs. Bourque voiced her anguish over not being there for the milestones in Michelle's life -- her 18th birthday, her graduations, her wedding day.

"I have so much more to say," she said, "and so much more to do and so much more to teach her."

In their first visits last April, the nurse also encouraged Mrs. Bourque to write down her hopes, her life lessons and all the values she wanted Michelle to know as she grew. She also could put aside heirlooms and tokens of her love for Michelle to receive gradually, in the same way that one of Ms. Patel's patients made special bracelets for each of her 3-year-old daughter's future Christmases and Easters and birthdays.

"You have a blank canvas," Ms. Patel had said. "You know a lot of people fear, 'Oh gosh. The memories of my mom will fade.' And this way, the memory will stay."

So her daughter would know the battles she had fought for her, Mrs. Bourque spent the next several weeks putting together scrapbooks -- starting with Michelle's premature birth, six weeks in neonatal intensive care and a trip halfway across the country as a toddler for surgery to remove a growth on her neck.

She wrote letters -- one for the day she died, another for Michelle's 18th birthday, and another for her daughter's wedding day. When her husband got goggle-eyed about what he'd say when Michelle had her first period, Mrs. Bourque was able to laugh, "I'll write a letter for that, too!"

Reverse nesting, she'd say, for death -- not birth. She was desperate to leave pieces of herself, to keep them connected somehow.

It was a relief, she said, that doctors were no longer shielding them with silence -- protection she once welcomed but now saw as doing more harm than good. She wished she'd had the help of palliative care sooner.

"It's helped focus me that we need to get things done," she said. "It's very hard facing your own mortality, and this has given me time to work things out with God, to work things out with the family."

But by June, they were back at Baylor and Mr. Bourque said it felt like the last ground beneath his family was giving way. Looking at computer images of his wife's tumor, he could sense their existence collapsing. There was a divide his wife would cross alone.

"She won't last the year," he told Dr. de la Cruz.

How would he tell their little girl?

Their plan to visit New Mexico one last time might not be in the cards. Mrs. Bourque had longed to see her father's grave in Santa Fe, say goodbye to family and show Michelle the mountains where she and David married. They had a flight that next week.

But pain changed everything.

Painkiller patches and narcotic lollipops couldn't ease Mrs. Bourque's ordeal the night they rushed to Baylor. And Mr. Bourque was terrified of overdoing the drugs.

"Oh my God," Ms. Patel said to the Bourques as she walked into Room 421 that June morning."You've had your hands full."

Mrs. Bourque said she was feeling better, thanks to intravenous pain drugs. She looked monastic, with her chemo-shorn hair, pale skin and sunken blue eyes. Ms. Patel explained that Dr. de la Cruz and the palliative team's pain-management nurse were working on a plan.

Other clinicians could be reluctant to prescribe narcotics because of red tape and the stigma of those drugs, and patients hesitated to ask for them, fearful of drug dependence or seeming weak. But the palliative team knew the medicines could extend quality and quantity of life. Addressing pain and other symptoms aggressively freed people to focus on emotional and spiritual transitions, and the team had seen profound moments of transcendence as a result.

"You've been great," Ms. Patel reassured Mrs. Bourque. "We may just have to try something new."

They'd try to get a portable intravenous pain pump, Ms. Patel said, so the Bourques could stay home and enjoy life.

The question: What kind of life would that be?

Mr. Bourque saw hospice on the horizon but confided to palliative team members that he didn't want his wife to feel they were giving up on her. Mrs. Bourque couldn't bring herself to look there -- not yet.

"Sometimes I wake up and think I'm ready to go, to quit, but I just keep swimming," she said, her voice breaking. "I know we may be coming to the end of what might be possible."

At the next day's palliative team meeting, heads nodded around the basement conference table when Dr. de la Cruz mentioned the Bourques. A third of the team had seen them in the last two days -- Dr. de la Cruz, Ms. Patel, the pain-management nurse, a social worker, an occupational therapist who gave a guided meditation session, and a child-life specialist who visited with the couple about Michelle.

Dr. de la Cruz told teammates that Mr. Bourque was "ready to face facts." But he was scared to tell his wife that he needed to drop out of school to take care of her. "I said that's what he has to do," the doctor added.

Child-life specialist Emily Mulkey said she planned to talk with Michelle that morning.

Specialists from Baylor's pediatric rehabilitation hospital helped out informally with the palliative team and were trying to get funding to do more for palliative patients' children. It was too easy for kids to get lost in grown-ups' hospitals.

Would insurance cover a portable IV pump? someone else asked. Some companies rejected such equipment requests, and they'd have to work fast to get the Bourques on their way to New Mexico -- a trip that was one of the few unfinished entries on Mrs. Bourque's self-styled "bucket list."

Ms. Patel set her jaw. "We have to make that happen."

The purple book, Mama's Going to Heaven Soon, had a childlike drawing on the cover of a woman flying through the night sky with an angel.

The Bourques lacked the words to tell their daughter , so Ms. Mulkey, the child-life specialist, brought the purple book along for her meeting with Michelle, a spunky towhead with hazel eyes and a Tinker Bell T-shirt.

She was 4 when her mother was diagnosed with cancer. She had no memory of her mother that didn't include illness, treatments and hospital stays.

After Ms. Mulkey led her to an empty office near her mother's hospital room, Michelle insisted that her mom was OK.

Swinging her legs on a rose-colored vinyl chair, the little girl showed off her stuffed animal, a snow leopard, and bantered about friends named Emily and cats outsmarting dogs. "The old saying of 'Cats rule and dogs drool'?" she said. "Dogs actually drool!"

Smiling, Ms. Mulkey held up the purple book and read its title aloud: "Mama's Going to Heaven Soon."

"It's got pretty long pages," Michelle said, doubtfully.

Ms. Mulkey read and Michelle fidgeted until the part where the storybook mom stayed in bed. She called out: "My mom does, too!"

What, Ms. Mulkey asked, might the storybook girl want to tell Mom?

"Please play," Michelle said, her voice suddenly small.

How might the little girl feel?

"A little prickly and funny," Michelle said. "Sometimes I might smile a little bit, but not much."

Hearing that the storybook mom had cancer, Michelle said cancer was a germ that grew and grew. She thought that she might've made her mother sick.

Ms. Mulkey shook her head. Kids often worried like that. "I don't want you to feel like it was you," Ms. Mulkey told her.

"My body doesn't believe in cancer, except my mouth," Michelle declared. "I talk about cancer a lot."

Cancer sent her grandpa to heaven, she added. "I still miss him, and I have a picture."

"Can you call him in heaven?" Ms. Mulkey asked.

"He doesn't have a phone," Michelle said. "Maybe we can send an e-mail."

Could her mom talk from heaven?

"You have to listen closely," Michelle said.

As Ms. Mulkey read how the storybook mom went to heaven, Michelle's face darkened. Her eyes darted around the cluttered office, looking for relief in the stacks of papers and files.

"I do not get it," she finally said, her voice flat.

The storybook girl felt sad and scared, Ms. Mulkey said. How did Michelle feel?

"The S-word," Michelle whispered, curling around her leopard.

Ms. Mulkey asked how her mom might be when they went home.

"Probably feeling better," Michelle declared.

Ms. Mulkey leaned in and spoke with care. "The medicines for the cancer aren't working. Your mama's getting to where she's not going to feel very good. And she's going to get sicker, and she'll eventually die."

"Sometimes," Michelle said, trying harder to sound brave. "Maybe not."

Her mom's doctors were very sure, Ms. Mulkey said, "she's not going to get better."

"Why can't they cut the cancer away?" Michelle blurted. "Why can't they cut her open and take some of the cancer again? They took some of the cancer out. Why couldn't they take all of it out?"

"When people can't get better," Ms. Mulkey said, "they die."

The little girl curled into a tight ball, hugging her leopard.

Ms. Mulkey offered her a plush bunny with pockets for keepsakes and said she could decorate a white memory box, too.

Michelle wrote "Penni" and drew a heart on the box and glued cotton balls and feathers inside. She tickled Ms. Mulkey with a fuchsia feather and talked about how the bunny might fit in with her family of stuffed animals.

Returning to her mom's room with the bunny and the book, Michelle climbed in bed to cuddle. Mrs. Bourque put the bunny in her lap, opened the purple book and read its title: "Mama's Going to Heaven Soon." She whispered to her daughter: "I'm not going to cry."

Michelle, wide-eyed, held her leopard tight and chewed gum fast. She giggled nervously when her mother read that the storybook mom felt too bad to get out of bed. "That's what you say, too!"

"I know," Mrs. Bourque replied. "Sometimes I'm just too tired."

When Mrs. Bourque read that the storybook girl didn't know why her mom was sick, Michelle giggled again.

"I know why you're sick!" she said, leaning her head on her mother's shoulder. "You have cancer!"

"I pray for my cure," Mrs. Bourque said softly.

She looked stricken as she read how the storybook girl wondered why her mom wouldn't come home. "I can't read this part," she said.

Michelle recited for her: Don't you love us anymore?

Mrs. Bourque fanned her face with her hand and looked away.

"I will always love you," she whispered, wiping tears.

A technician came in to take Mrs. Bourque's temperature.

And then the little girl in the Tinker Bell shirt tried what magic she had left. She threw the purple book off her mother's bed and reached for a Mickey Mouse coloring book.

"Alrighty-righty!" she declared. "Which side do you want to color?"

Penni Bourque began that Friday, the 13th of June, happily wandering the airy, yellow fourth-floor hospital hall, past larger-than-life paintings of women living heroically with cancer. Pushing an IV pole in her pink pajamas, green chenille robe and fuzzy slippers, she was giddy about going home.

Her daughter seemed better, too, chattering on the phone with her mom the night before about a movie. Michelle had said matter-of-factly that she hoped her mom lived to see it. She didn't seem as sad or distant or mad at the cancer.

By noon, however, no one had come to discuss Mrs. Bourque's discharge. That meant she'd probably be stuck at the hospital all weekend and miss her flight to New Mexico.

She was hunched on her bed, crying, when Ms. Patel appeared at 12:30 p.m. "My favorite patient!" the nurse called.

"All my doctors are gone," Mrs. Bourque wailed. "I'm all alone."

Ms. Patel was instantly at her side, arms around her.

"We all know what's going on with you," she soothed. "We'll make sure that we take care of you."

"I just can't stay in the hospital," Mrs. Bourque cried. "I was getting to go to Albuquerque."

"It's going to be OK," the nurse told her. "We'll fix this."

Ms. Patel sprang into action. Her 16 other patients would have to wait. She punched numbers on her cellphone, as she dashed down the hall to the nurse station, where she grabbed a second phone.

"She's going to go home today," Ms. Patel declared to three nurses. She grabbed Mrs. Bourque's medical chart. "I need to sort out this mess," she grumbled.

Scooting in an office chair over to the medical records clerk, Ms. Patel waved a prescription form for Mrs. Bourque's pain medicines that would have to be signed in triplicate.

"Girlfriend, would you do me a favor?" she asked the clerk. "I know you will for me. I know you will. Will you fax this over to [Dr. Mark] Casanova's office? I'm good, I'm good. I'm good at begging. Let's fax it over to his office so I don't have to run over there now. Then I can run over later and pick this up."

She then rode herd on a home health company, corralled a pharmacy, and spurred a medical equipment provider to do in minutes what usually took a day.

Fourteen phone calls and an hour later, the nurse walked back into Mrs. Bourque's room with signed prescription forms and a final hug to send her on her way.

Michelle bounced in soon after, declaring herself invisible. Smiling, she said her mother "has been with the angel."

Mrs. Bourque and Michelle headed down to a patient-discharge door where Mr. Bourque had the family car waiting. Michelle shadowed her mother's wheelchair, play-acting. She was a tiger, growling. She was a monkey, hooting. She was invisible, dancing.

Her mother watched her, laughing the whole way out of the hospital.

If cancer had taught them anything, perhaps most important was how seemingly random moments -- like this one with Michelle -- could be the greatest gift. Mrs. Bourque had grown up hearing she had a purpose, and she'd always puzzled over what that might be.

She giggled at her daughter dancing down a busy Baylor hallway, toward David and home. In such moments, she would later say, everything was so clear. Touching and sharing lives and seeing her love move outward to others wasn't that purpose enough?

It felt good, too, to know where they were headed. Death would come. But Mrs. Bourque was going to live as long and well as she could.

As the Bourques drove off in the family car, with Michelle waving goodbye from the back seat, Ms. Patel was already speeding into another room upstairs, calling out, "How's my favorite patient today?"Last of five parts

1 comment:

Michael Manning said...

In my utmost Thoughts and Prayers...