Inside, Dad sits in his rocking chair, watching TV. The kids are off at school, and Mom is on the couch. But the topic of conversation isn't the recent summer vacation or "did you see Junior's grades?" -- it's cancer. That's terminal cancer for 36-year-old Chris Nilhas. He has it and has been surviving with it for more than a year. The matter at hand is whether to seek a second opinion. Chris' oncologist stopped his chemotherapy two weeks ago, predicting his patient had only months to live. Chris' wife, Beckie, who has been grappling with past-due bills, medical insurance, doctor appointments and raising the couple's three young sons, sees his desire for another medical opinion as just another form of denial.
To an eavesdropper, the dialogue may seem harsh. Chris' cheeks are concave, sunken. The whites of his eyes have turned yellow as a result of jaundice caused by his failing liver. His abdomen is distended, as if he were five months pregnant, but what's inside him isn't life but the ravages of colon cancer that has spread to his liver, his lymph nodes and all points in between. He's sometimes short of breath. He rarely sleeps for more than an hour at a time. He can't stray far from a bathroom because bodily functions have become more urgent and less controllable. But even as the discussion deals with his demise, Chris seems peaceful, often reaching out with his socked foot to nudge Winnie, a furry white cat lying at his feet. Beckie, an energetic 34-year-old strawberry blonde, is leaning forward on the couch, making her points with slight exasperation because she knows she's made these points before and will again.
"You never wanted a second opinion, all along," says Beckie. "Now that Dr. Morris is giving you the final diagnosis that you didn't want to hear, now you want a second opinion."
"Sure," Chris says. "If it has to do with life and death, yes."
"But you have a terminal disease, and it's going to take your life anyway."
"Maybe. Odds are, yes. I understand that; I also understand that six months from now maybe they'll have something you can take so you can live with it -- it won't cure it, but maybe you can live with the disease."
Beckie has heard this hope before. Chris' cancer specialist, Dr. William Morris, works out of St. Anthony's Medical Center, but he has been in contact with specialists at St. Louis University Medical Center. Beckie believes that if any hopeful experimental approach to Chris' end-stage cancer existed, his doctor would already know. So this is one exercise in futility she's not willing to pursue, and she explains that to her husband of 12 years: "Dr. Morris called someone at SLU, gave him all the information, said, 'Is there anything experimental? Is there anything else we can try?' No."
"Not at this point," Chris says.
Beckie turns away from him. "That's not a second opinion, to Chris."
But Chris continues: "My brother's wife works at SLU, in some lab, working with mice and all that kind of stuff. She's one of them who said she'd get me the doctor's name and I could call him," he says. "It's just one of those things where I guess I'd feel better if another person said...."
It's time for Beckie to be blunt.
"Have I sat on the phone and said, 'Honey, you can't call'? No. You can call. You can go get your second opinion. I'm not going to go with you," Beckie says. "You can go get a second opinion -- I don't care, because I don't agree with it. You can go. I think you're going to get the same exact thing that Dr. Morris has given you."
The couple's discussion may sound as though it's lifted from a death-and-dying workshop based on the books of Elisabeth Kubler-Ross -- the patient not yet accepting what's happening to him, his spouse having to shine the light in his face. But this is no seminar. Chris and Beckie have been at this since April 2000, when Chris became the terminal mate and Beckie the caretaker spouse. For the last 16 months, Chris has been fighting the metaphysical foe of death with a positive outlook that usually includes a dose of denial, and Beckie has been fighting a rear-guard action against bill collectors, insurance companies and government agencies, each with its own cold frontman who isn't interested in sob stories.
They both knew that what they were facing would be a nightmare with no wakeup call, but somehow they thought the demon would be the disease, not the descent into a financial inferno where their shelter, their food and their independence are threatened. The premature mortality of a father with three young sons was tragic enough itself; Beckie and Chris had no idea that the rest of his dying would be so difficult.
The numbing part of the Nilhas tale is not that the system broke down or didn't do what it was supposed to do. In many ways, the system did what it usually does, which is another way of saying it didn't do much to make things any easier for the family. Beckie and Chris both worked; they lived in a typical suburban home and had medical insurance. But when serious illness surfaced, that apparent security evaporated as a two-job family became a one-job family and then a no-job family. The government and corporate institutions they thought would help them came up short, and those who came forward in their time of need were strangers, both from their neighborhood and from afar.
The Nilhas family may have been living on a thin line, by some standards, before cancer came into their lives, but they were by no means destitute. Chris and Beckie could have served as a poster couple for the new service economy, in which Wal-Mart is the nation's largest employer and gambling is a growth industry. Chris worked for nearly seven years as a security guard at Station Casino St. Charles, and Beckie was a cashier and then a supervisor at the Toys R Us at Lindbergh Boulevard and Watson Road. Before those jobs, Chris worked on the loading dock of a trucking company; Beckie was a secretary at Maritz Inc. in Fenton. Both were graduates of Eureka High School, where Chris was the second-string defensive end on the football team and Beckie was on the pom-pom squad, one year behind him.
Around the time Chris started to notice symptoms, Beckie was earning about $25,000 a year at Toys R Us; Chris was making about $11 an hour at the casino, or about $23,000 a year. He had to cover half the cost of his uniform, and he paid $120 a month for an HMO insurance plan, plus extra for life insurance. But he opted not to buy disability insurance, a decision that later proved a major mistake.
"He didn't sign up because he never got sick," Beckie recalls. "Some companies, like Maritz, it was automatic. You didn't have to sign up for it; you got it. Like, when I had kids, I was on disability through Maritz. I didn't have to sign up or pay for it. At his work, you had to pay for it."
The couple's baseline expenses were the house note, two car payments and utilities. Four years ago, when Chris' 62-year-old father died of complications from knee surgery, the couple inherited his house and refinanced it so they could finish the basement and do renovations to accommodate their five-member family. They drove two 1999 Ford vehicles -- the F-150 and a Ford Escort. Before they married, Beckie had filed for bankruptcy protection as a result of credit-card debt, so these days the couple was steering clear of plastic. Without lots of unsecured debt, the Nilhases actually were doing better than many in the American mainstream, where consumers carry a record debt of $7.5 trillion, more than twice what it was in the early 1990s.
For Chris, the first signs of anything wrong with his health were vague flulike symptoms, including pain across his abdomen and some difficulty with bowel movements. After blood was found in a stool sample, a colonoscopy was ordered. The rectal probe hit a blockage.
"It was a Tuesday in April," Beckie recalls. "When we went to the doctor's office, four doctors came in, so we knew it wasn't good. They told us it was cancerous. They told us that a part of his colon needed to be removed. He had surgery on that Friday."
The surgery revealed more bad news: The cancer first detected in Chris' colon was widespread. There was no way to cut it all out. Chris was referred to Morris, the oncologist, for a chemotherapy treatment plan. Morris broke down the situation for the couple who just two weeks before had thought everything was fine.
"We walked into the oncologist's, and the oncologist said, 'This is going to kill you. This is what is going to take your life. You will not work any longer. You will take chemo for the rest of your life,' Beckie recalls. "Now that we know him, we appreciate him being that way. He's very forward with it. He also said, 'My goal in this ... is to make you live longer. I'm going to make you comfortable -- I can maybe make you comfortable for a week, a month, a year, five years, but I will not go any further than that," she says. "The way he said it hurt us, but it made us really think. He said, 'You have three boys. Go home and enjoy them. Do everything you can with them. Take care of your insurances, take care of everything, get everything in line.'"
Chris heard what the oncologist was telling him, but he didn't accept it as gospel. He insisted he would beat the cancer, that he would live to see a cure for what was spreading inside him. Beckie reverted to her secretarial days, feeling compelled to keep records of everything that was happening. She put every event, every doctor visit and every piece of correspondence into a loose-leaf binder.
As of last month, 16 months after the initial diagnosis, by Beckie's binder count, Chris had received 52 chemotherapy treatments; had four hospital stays and made 21 doctor visits; and undergone six chest X-rays, five CAT scans, four MRIs, three ultrasounds and one PET scan, plus weekly blood tests. The chemotherapy started with intravenous administration of 5-fluorouracil and pills of Xeloda; Chris also received IV doses of the antibiotic NeuTrexin. In April, three harmful strains of bacteria were detected in Chris' blood; he was hospitalized so that a strong antibiotic could be administered. But the treatments failed to stem the cancer's spread. The results of a test that reveals tumor markers in a blood sample went from an April 2000 level of 8,733 "tumors" to 52,012 on June 29 this year.
Since that bleak Tuesday when Chris was first given the cancer diagnosis, he has not worked. He first used up his sick days, but after that he received no income from Station Casino. After his supply of sick days was exhausted, the Family and Medical Leave Act kicked in. During that 12-week period, his employer was required by federal law to pick up the cost of medical insurance. Then there was a 30-day leave, when Chris paid his normal part of the insurance. After that, Chris was protected by the federal Americans with Disabilities Act, which enabled him to keep the same insurance coverage -- for a while. Once it became clear that Chris likely would not return to his job, even in a disabled capacity, the ADA protection disappeared.
On Aug. 7, 2000, just four months after his diagnosis, Dr. Morris sent a two-sentence letter to Station Casino: "Mr. Nilhas is under my care for colon cancer metastatic to the liver. He is totally and permanently disabled." Chris continued to pay his share of the monthly insurance fee and was covered by his HMO, HealthLink. On Oct. 12, Dr. Morris sent another letter to Station Casino. Two new sentences were added to the text of the earlier letter: "Chris cannot physically perform the duties of his job. He is currently receiving treatment and at times his immune status is severely depleted due to the treatment."
On Oct. 26, Chris' supervisor called Chris and told him his employment was being terminated. That meant the employer had to offer COBRA coverage, in which the former employee can continue the same medical insurance, provided he pays the both the employer's and employee's shares of the coverage. For the Nilhas family to continue the same health benefits would cost $410 a month. To carry Chris alone would cost $135. Chris and Beckie decided to carry just Chris and turn to Medicaid to cover the rest of the family.
Beckie mailed an application for COBRA coverage on Nov. 15 and received a notification on Nov. 22 saying that to extend coverage, prorated for part of November and all of December, $157.55 was owed. Beckie sent a check for that amount on Dec. 18, then waited for a bill to come in January. There was no bill. But then, a bill isn't supposed to be sent monthly, something that was mentioned in the initial notice but that Beckie didn't see or doesn't remember seeing. On Feb. 9, Beckie called USI, the insurance handler of the COBRA account, and was told that because she had missed a payment, Chris had been dropped from the plan.
That meant Beckie also had to turn to Medicaid to provide coverage for Chris. In order for the family to qualify for Medicaid, they were required to "spend down" what was left of the family assets. The family's retirement savings were cashed in. Because she needed to be home more often to take care of Chris and the kids, Beckie had stopped working at Toys R Us and had taken a part-time job waiting tables at Denny's to bring in some money. To stay on Medicaid, she had to quit that job. As long as the family's assets were low enough, they also qualified for $250 per month in food stamps.
By this time, because he was disabled, Chris qualified for Social Security payments. Chris receives $911 per month, and each child qualifies for $151 per month. That amounts to $1,364 per month. Because Beckie couldn't work without jeopardizing the family's Medicaid coverage, that $1,364 per month, along with $250 in food stamps, represents the total income of the Nilhas household. With a monthly mortgage payment of about $800 and a truck note of $409, little was left for miscellaneous fees, particularly utility bills, gasoline costs, clothes and day-to-day expenses.
Chris and Beckie hoped they could trade in the '99 pickup truck and Escort for one vehicle or do some kind of trade-in or swap. "We had two vehicles with two loans because we had two jobs, we had normal lives. When all of it went down, we wanted to turn one of the cars in," Beckie says. They went back to the dealer to talk about the idea of doing a "voluntary repossession," turning one or both vehicles back in because they couldn't afford them any longer.
"We walked into the dealership -- and this is how cold people are -- we told them our situation, told them what we wanted to do, and the guy said, 'Well, with your income and everything, we can't do anything for you, but you do have life insurance on both of these, so when your husband passes away, they're paid off.' I walked out of that door crying," Beckie says. "That was said to me in August of last year, so it was all very fresh. People just don't think before they talk."
The dealership eventually did agree to take the Escort back, but that wasn't the end of it. A lawyer for the dealer called several months later because the Escort's sale price didn't cover what was owed on the loan. "They sued us for the difference between what it was worth and what we sold it for," Beckie says. "That was in December that I got a call from a lawyer saying they were doing that. I told the lawyer everything that had happened. I was emotional; I was crying. I never heard from that lawyer again. I guess they dropped it. I'm not going to call them. It was only $3,000 -- for Ford, that's nothing."
Because of the six-month gap between the time Chris' paychecks stopped coming and Social Security benefits started, utility bills and house payments had piled up. The bill collectors were ringing the phone off the hook.
"The majority of the time, we didn't answer it," Beckie says. "I could answer, and I'd tell them everything that I tell them all the time, and then they call back. So why tell them again? If I have the money, I'll answer the phone -- or, if I have the money, I will send it."
Chris was sometimes more direct. "There were times they'd call after 9 o'clock," he says. "I'd pick up the phone and say, 'It's after 9 o'clock,' and then I'd hang up."
Beckie tired of telling the truth, particularly when it did no good.
"When I give them our story, they come right back at it. They are so cold. They couldn't care less," she says. "I'm sure they hear a lot of stories. It's 'When are you going to send that payment?'"
In the four years the Nilhases had lived at 720 Rockshire, their interaction with their neighbors seldom went beyond a wave, a hello or a brief conversation about leaves in the gutters. Once neighbors started to figure out that the comforting parts of reality were eroding daily for the Nilhases, they began to ask whether they could help. Denise Pauley and Evelyn Barton, who lived in the two houses to the east of the Nilhases', offered to call creditors and utility companies.
Both Denise and Evelyn are single mothers. Evelyn's husband died of cancer during the past year. "One night when I came home from work, I asked Beckie to give Evelyn and me a list of their bills," says Denise. "I sat down and went through their bills. I realized they weren't just in trouble, they were drowning. I realized they might be losing their house.
"They just fell through the cracks. These are not people who know how to milk the system," says Denise. "They just knew how to go to work and pay their bills. But once they started losing ground, it was a slide to the bottom. Then, when they started to ask for help, it was doors slamming in their face: 'Oh, you make too much. Oh, you've got a house.'"
Denise grabbed the stack of Nilhas bills and brought it to Des Peres Hospital, where she works as a nurse. One of her co-workers took the family's Metropolitan Sewer District bill, which was several hundred dollars in arrears, and paid it. Whoever paid the bill -- Chris and Beckie don't know their benefactor's name -- explained the Nilhas family's predicament to an MSD employee. "We got a letter from this lady from MSD saying, 'Sorry to hear about your situation, your bill is paid in full, please accept this and take your children somewhere.' She had put $15 cash in it for us to take our kids out to McDonald's or somewhere," Beckie says.
When Denise showed the Nilhas bills to her co-workers, one nurse gave all her overtime pay -- about $500 -- to the family on her next payday. "This is a nurse with two children who lost her husband a year-and-a-half ago," Denise says. "These are not wealthy people. I was amazed how many people jumped in and tried to bail these people out without ever knowing them."
A trust fund was started at Midwest BankCentre in Fenton, and neighbors continue to solicit donations, even standing at the entrance to the subdivision to collect from drivers at the stop sign. The understanding and compassion on the part of individuals, even strangers, contrasted with the indifference of companies that were in a real position to help the Nilhases.
"What's weird is that big companies treat you that way," says Chris. "But then there's this girl who lives up the street here. I've known her since I was a little kid. She works for HealthLink, the insurance company we had. One day she came down with a check for $1,300, saying, 'This is the money we collected through work,' and all this kind of stuff."
Even workers at the Ford plant in Hazelwood chipped in for the family. Whatever government or corporate insensitivity made life worse for the Nilhases, that real people rallied around them did lighten their load.
"I can't stand to see an injustice. It just irks me," Denise, the nurse, says. "I see a lot of things everyday. I watch people die. That's what I do. Chris is not going to make it. It's a matter of time. That's just the way it is. I couldn't bear the thought of them having to move out of their home or, as he's dying, to think not only is he not going to be with his family but he has no idea where they'll be tossed to, where they're going to be living."
When it came down to stopping the foreclosure process, Beckie did what she had to do.
Because they were behind on their house payments, the monthly amount due to prevent the loss of the home was greater than the usual $800 payment. She didn't want to tell her mother and stepfather, who are retired and live in Union, how bad things had gotten.
"We had -- well, I did -- an emotional day Sunday. I just kind of broke down and lost it. I don't like to ask for help. I knew all along if I would have asked my mom and my stepdad for help, they'd do it, I know they would, but I don't like to. They found out from another source, and they came over yesterday. They're bringing our house out of foreclosure, and they're bringing our truck current. It's almost, like, 10 grand, and I didn't want to ask them."
But the help, which only catches the house payment up to where it's back to $800 a month, wasn't achieved without a certain amount of grief.
Beckie's stepfather took her to Fenton Park to talk. "I had my sunglasses on because I was crying, I was upset," she says. "He pulled down my glasses, and I looked at him, and then I looked away. He said, 'Look at me.' I said, 'I don't want to look at you, because all I see is disappointment and I hate, I hate seeing that. That's why we don't like asking for help, because that's what we see when we ask for help,' that and 'Well, why did you let it get that far?' My mom was sitting there. My whole life, I've never seen my mother cry, and my mother was crying."
Beckie usually keeps her crying to herself.
"I cry. I cry at least two or three times a week, but it's not when I'm at home. It's when I'm driving or whatever, because I don't want to do it in front of Chris," she says. "His mom will come over every once in a while -- he's her baby -- and she'll start. We went on vacation with her; she took us to Branson for a week. We went someplace, a wax museum or something, and she looked at him and started crying: 'He looks so lonely. He looks so tired.' I said, 'You know what, Dorothy? Don't do that -- don't do it. Not in front of him, and not in a wax museum.'"
The approaching inevitability is even reaching Chris, who has been resilient and tenacious through the ordeal.
"I can tell it's soaked into Chris a little bit, because he cries more," says Beckie. "He gets more upset. It's good to me because that means he's accepting it. He may not say it, but he's accepting it a little bit. He knows it's out there now."
Hearing his wife say that leads Chris to explain what it is that pushes his composure past his limits. "If it were just me and her, it wouldn't be so hard. But with the kids, it's just, y'know," he says, choking up. "I always wanted to hold one of my grandkids, rock 'em and all that," Chris says, then breaks down.
Nick, 10; Tony, 8; and Joey, 6, have been fully informed of what is coming. When Dr. Morris stopped the chemotherapy two weeks ago, he said it was time to tell the boys. On the way home from the doctor's office, Beckie called Evelyn to come over and be with them when they told them.
"Chris and I walked in; we were both crying," Beckie says. "Nick was sitting on the couch. As soon as we walked in, he said, 'Oh no, Dad's days are numbered.' He knew, and he started crying. Then Tony and Joey and Evelyn came in. I sat over there and told them. All of them started crying."
But even in the midst of all this coming to grips with impending tragedy, youth will be served; life goes on.
"Within about a half-hour, Tony, our middle one, was sitting on my lap, and he whispered, 'Can I go play at Tyler's?' They're kids. They were told something that's devastating, but Dad's still here and they're enjoying every day that they have, and that's all they can do," Beckie says. "But it was funny at the time. I told him, 'Yes, you go play.' He said, 'Can I tell them about Dad?' I said you can tell whoever you want."
Tony came back and asked whether Joey wanted to play. He did. Beckie recalls, "Nick says, 'No I don't want to.' Five minutes later, it's 'C'mon, Nick, we're going to go to Tyler's and play ball.'" Nick went.
"Nick takes it the hardest," says Chris. "Because he's the oldest, he's closest to me."
The main outlet for Beckie has been what she calls her "venting letters." She's written them as she sits in waiting rooms, or late at night or early in the morning. They're addressed to insurance companies, politicians, Chris' former employer, whoever or whatever she thinks might have treated them better along the way and made a horrible, deadly trip a little more humane.
Chris sees her do this but says it's just not his style: "I look at it one way and say (a) yes, it bothered me, and (b) I knew no matter what I did, it wouldn't make a difference."
This has been the drill for their whole marriage. "Chris never complains," says Beckie. "If he had to return something, he made me do it. He never complains. Never."
Well, almost never. When he talks about his employer of seven years, he still somehow thinks, because he was a good worker and had medical insurance, that once he got sick, no matter how sick, he should have been able to keep his insurance coverage.
"You always think -- I thought I was going to go back. It was just 'We'll do this for so long,'" Chris says. "You'd think they'd let you stay on the insurance, because it ain't hurting them. If they're keeping me on there, they're not paying me; all they're doing is taking care of my insurance. It's not like I'm drawing a salary, too, and they're paying me for not being there."
And when Chris was told by his supervisor he was being fired because he couldn't return to work, he was told he could return to work if he got better but that he would have to "start at the bottom." That "ticked me off," Chris confesses.
But normally Beckie is the battler, for good reason. After months of resistance, she finally got Chris to fill out a living will. Now one of her goals is to get him to write three letters. "I want him to sit down and write a letter to each of the boys about what he would like to see them do in life, what he thought were the best things about his kids, so if it does happen, the kids can open that after Daddy's gone and see," she says. "It's a goodbye type of thing.
"I sound cold when I talk about it. But I've accepted it," Beckie says. "I know, unfortunately, that my life is going to begin all over again when Chris is gone, because I have to raise those three boys all by myself. I want the boys to have a good remembrance of Daddy, not a sick remembrance of Daddy. Daddy's Daddy, no matter what he looks like."
Even though she wrote many of them months ago, Beckie mailed the venting letters just a couple of weeks ago. She's gotten one form letter back from the state insurance commission, saying that what she was complaining about was not in the agency's jurisdiction, and Chris got one call from his former supervisor at work. The supervisor wanted to know what he could do. Not much now, he was told. Beckie also wrote to U.S. Sen. Jean Carnahan, beginning the letter by saying how sorry she was about the loss of the senator's husband, Mel, and her son and friend.
"I wrote 'personal' on each one. Ms. Carnahan has a personal assistant who will open it. I know Ms. Carnahan will not open it. But if it could get past even one person to get a person closer to her, by me putting 'personal' on the front of it, I hope it does," Beckie says. "I don't know if it will, but it doesn't hurt to try.
"I feel better writing those letters," she says. "And I know it's not going to do anything. I know it's not going to do anything. But if it puts something in the back of their minds, the next time they're sitting at their roundtable signing a bill, hopefully they'll say, 'Oh, there was this one family....'"
Chris decided not to pursue additional medical opinions. Hospice visits to the Nilhas home began last week.
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