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With health care tied to job, Copley family battles to keep daughter with cancer covered
By David Giffels
Beacon Journal staff writer
Published on Sunday, Jul 20, 2008
As she talks, Christine Gurbis unzips a teal vinyl bag that looks like a makeup case and she removes four glass vials — three brown and one clear — along with two needles and a syringe.
She sets them before her on the family kitchen table, lined up like captured chess pawns.
She and her father are talking about her sister Carrie's upcoming wedding, and it's as though the needles and the chemicals aren't even there. Like the act of breathing, they are vitally mundane. These thrice weekly injections in her backside, usually administered by her mother, Mary Kay, keep her life something like normal, which is another way of saying Christine's life is not normal.
''Her mother's quite good,'' Al Gurbis says of his wife's skill with a syringe, in a tone that might just as easily describe her facility with a bundt pan. ''Very seldom does she bleed.''
Christine twists one of the needles into place and jabs its tip through the rubber top of the saline bottle, drawing back the stopper to extract a milliliter of the liquid, which she then squirts into the first brown bottle, liquefying the powder inside. She repeats this two more times, never losing pace with the conversation, shaking each of the three bottles to mix the solution. When she is finished, she draws the contents of each vial back into the syringe, which now contains the day's dose of Synthroid to replace the hormone that is supposed to be secreted by the thyroid gland.
Christine doesn't have a thyroid gland. Instead, she has a long scar across the front of her neck, a pink line that tells the story of her raw deal with cancer. It traces the story of a young woman's life — of an entire family's life — that changed completely and forever when Christine asked her doctor about a lump at the base of her throat.
Here's what cancer did:
It wrenched an independent, emerging young woman from her place in the world back to a bed in her parents' house.
It cost her a good job with benefits.
It knocked her out of college 12 credits shy of graduation.
It alienated her friends and left her nearly alone.
The cancer is gone, but so is the thyroid, meaning Christine will never be ''cured.'' These injections, or some version of them, will be with her forever.
This is what treating the cancer did:
It led the family on a chase after insurance: maintaining Christine's policy meant paying premiums that rose from about $20 a month in the fall of 2003 — when she was diagnosed — to nearly $800 by mid-2007 — when she'd nearly run out of affordable options.
It cost the family at least $110,000 more in additional medical costs, the money sucked from savings.
It sidetracked her 65-year-old father's retirement, which would have begun this year.
It forced the Gurbises to restructure their family business to accommodate a daughter whose chronic disease affects when and how she works.
A financially comfortable family with all the resources one might hope for — including a mother with an insurance license and an unusually refined understanding of the health-care system — was tested to its limits.
If they struggled to get through it, what does that say for the rest of us?
Costly injections
This stuff burns the skin pretty harshly, so Christine removes the syringe she used for mixing the injection and replaces it with the clean one. The used needles go into a Gatorade bottle on the kitchen counter, emptied of its original contents and now filled with the byproducts of her injections. When it fills up, it goes into the trash.
Each injection costs nearly $100; Christine's out-of-pocket expense is close to $30. The amount is significant because it is part of a sweeping, ongoing and complex formula that has been tended by this family carefully, sometimes bitterly and always with the awareness that it is as much a thing to be treated as the cancer itself.
This wedding that they're talking about — it's a complicated subject for Christine. She is the maid of honor. She will, a week after this conversation, sit in the living room amid the swirl of a wedding shower, a room that has been newly carpeted in time for this event, a domestic detail of ceremony that underscores the importance of this summer for the Gurbis family.
She is happy for her sister, thrilled, even. And not resentful, not of Carrie. But still. She is a young woman standing off center as a chief attendant to something she expected for herself someday and now can't see happening.
''Hell, I'm 30 years old and I'm at home with my parents,'' she says, then adds sardonically, ''maybe I'll start dating some guy who doesn't mind needles.''
Her cancer proves chronic in new ways every day.
Christine and her mother disappear through a door off the kitchen. They return with another empty syringe.
Families vulnerable
This is the story of how one family met the challenges of a disease and its attendant costs, the ways it had to cling to an insurance plan that itself was barbed deeply into a job that cancer made unworkable. It's a story of ironies and paradoxes and Catch-22's.
It's the story of a fear that lies dormant in every family, the specter of a medical catastrophe and how it came tumbling down into reality. But even without the tragedy of the illness, the costs and requirements of health insurance are at the forefront of American burdens, perched heavily alongside fuel and heating costs, credit debt and the mortgage crisis.
The plight of the uninsured is marked, with the National Coalition on Health Care reporting nearly 47 million Americans without health insurance. But having insurance has become a burden of its own, with drastically increased premiums and out-of-pocket expenses.
The latest figures from the U.S. Department of Health and Human Services show health-care spending made up 16 percent of the nation's economy in 2006. That works out to $7,026 for every man, woman and child — more than four times the 1970 amount, adjusted for inflation.
Ohio fared worse. The state's per capita spending for personal health care, which includes hospitals, doctors, nursing homes and drugs — was 8.4 percent higher than the U.S. average in 2004.
Dealt a bad hand
The maddening thing, the thing that sometimes pounds against Christine's mind when she lies awake at night, is just how random it all was.
She was a young woman, then 24, at the beginning of her adult life, studying business and marketing at the University of Akron and working full time in title loan documentation for National City Bank, where she had been employed since late 2002.
She had friends, a busy social life, a sister two years older with whom she could share her dreams and ideas of where their lives were headed.
She was a dancer, a tennis player, a swimmer, an unusually healthy eater; she talks about radishes like some people talk about chocolates.
She and Carrie had moved home temporarily after ending the lease on their apartment. Carrie was able to move on, but Christine stuck close to home while she underwent tests for ongoing health problems.
In the early fall of 2003, she went to see her doctor about a lump she'd been feeling in her throat that looked and felt like an Adam's apple. She'd had nagging medical problems — endometriosis, tonsils that had to be removed, trouble swallowing — but was always healthy enough to bounce back. She assumed the lump was related to some part of this.
The doctor performed exploratory surgery. By the end of October, he'd removed half of Christine's thyroid gland.
Doctors don't like to remove the entire thyroid if they don't have to. The butterfly-shaped gland controls a sensitive flow of hormones, acting like a control center for the body's metabolism. People operating without a thyroid can suffer memory loss, exhaustion, depression, weight gain and other problems.
But soon, the question of whether the other half of Christine's thyroid could be saved was answered. A biopsy came back. She had cancer.
Insurance paradox
At the time of her diagnosis, Christine was covered under National City Bank's Medical Mutual policy. The coverage, she says, was excellent. And affordable — her employee share was a little over $20 a month.
But her two operations and the effects of her radiation sessions made it difficult to work. She'd taken a short-term disability leave for the first surgery and would need another for the second.
A paradox was emerging, one she'd faced before. Five years earlier, when she was in college full time and covered by her parents' insurance as a dependent, she had tonsil surgery. The operation and recovery made it impossible to attend classes. But if she didn't attend classes, she'd lose her status as a student, and if she lost her status as a student, she wouldn't qualify for coverage.
Her parents had arranged to take her on as an employee to continue her coverage, a stopgap that allowed her to step out on her own, into the bank job, without an interruption of benefits.
But now she was faced with the real prospect that a long fight with cancer might make her unable to work. And if she had to quit her job, she'd lose her insurance. Complicating matters was that if she broke the continuity of her coverage, her cancer would become a pre-existing condition, which would make it difficult and very expensive to obtain new insurance.
For about a year, despite the heavy toll of radiation and the effects of adjusting to life without a thyroid, she managed to keep her job. But she was suffering from exhaustion, insomnia, memory loss and depression, still trying to find the right mix of medications to replace the functions previously regulated by her thyroid. Her hair was falling out. Her eyes were always swollen.
One day, for all her trying, she collapsed with fatigue at her desk. She was losing the fight, and she was compromising her recovery by pushing herself.
But her job was the only way for her to maintain medical insurance. She couldn't qualify for disability. She felt stranded.
In October 2004, she resigned from the bank and took her coverage into a COBRA plan, which would allow her to continue to benefit from group insurance, but at a much higher rate. Her monthly payment rose to $187.61.
She had moved back home. Ironically, the Gurbises had bought their house in a Copley subdivision because it could accommodate Mary Kay's ailing mother. Now, her mother had died and instead the extra room was occupied by their daughter.
In early 2005, her insurance premium rose to $299.50. By the beginning of 2006, the COBRA plan had risen to $378.25.
And that didn't account for the constant added costs of prescriptions, doctor visits, lab work and other expenses, the additions sometimes rising to $1,200 a month. With blood samples and lab reports zigzagging from one specialist to another, she'd sometimes get bills from hospitals she'd never even been to and be left wondering how she fit in the middle of a system she couldn't understand.
The trial-and-error cycle of her medications has left her with a plastic bin under her bed, the kind some people use to store their childhood toys, filled with prescription bottles.
''I'm a fairly intelligent person, but there's so much to it,'' Christine said. ''Your hair's falling out; you're crying; you haven't slept for a week. You're just getting bill after bill, and you don't even know where it came from.''
But even the high-cost COBRA plan would keep costs manageable only for 18 months. She had to find a long-term solution for a chronic disease.
Middle-class family
Al and Mary Kay Gurbis met in 1970, when they were both working for GMAC in Cleveland, he in finance and she in insurance. They met over the phone in the course of their work; the conversations grew into a romance, and they married in 1973.
Ten years later, with two young daughters, they decided to break out on their own. They formed A.J. Gurbis & Associates, a company selling extended warranties and other aftermarket insurance and financing products to auto dealers.
The company grew to include 13 employees. With no ongoing contracts, it was demanding work, a constant churn with steady regional travel and long days, but they did well and provided a good living for their family.
Many of their hopes for their children were fulfilled. Both daughters went to college; the girls had a close relationship, sharing an apartment in Akron as they grew into young adults.
By the time Christine got sick, Al and Mary Kay were settled into a new life as empty-nesters, planning their retirement and considering the future of their business. The industry had changed and they now ran the operation themselves, from a basement office.
By 2005, the question of their daughter's insurance had changed everything.
Christine was living at home, still struggling to find the right balance of medications, swinging from insomnia to an exhaustion that sometimes had her sleeping 20 hours at a stretch.
She was going to need to restart her career in a way that could include some flexibility for her health. After an arduous process of trial-and-error, Christine had found the Synthroid injections that did the best job of replacing the hormones normally produced by her thyroid. But she was hardly back to normal. With no thyroid, her condition is chronic, and the injections give only the approximation of health.
Joining the company
In mid-2006, Christine's COBRA coverage reached its end. Her monthly insurance payment jumped to $659.63, which her parents were paying.
The family decided that the best option was to hire Christine as an employee of A.J. Gurbis & Associates.
Although her background in banking and consumer loans did suggest she had something to contribute, it's not a choice Christine would have made otherwise. Neither she nor her parents ever expected one of the children to enter the company. But the decision had little to do with anyone's career plans. Christine needed insurance and stability.
She was hired in April 2007 to handle a variety of duties, including training dealers on Web-based programs, a key part of the company's 21st-century function.
By then, her Medical Mutual insurance premium had risen to $781. She needed to weather one last storm, to endure a three-month probationary period, before she could go onto the company's insurance plan.
Finally, last August, Christine Gurbis, newly minted as a service representative with the A.J. Gurbis & Associates Agency, moved onto the company'sSummaCare plan, at a cost of $273.36 a month, her premium covered by the company.
This would seem like a great relief, but everything in their life is relative.
As Mary Kay jokes: ''Every morning, I thank God she's still alive. But, yeah — she does get expensive.''
Tied to employers
Why is this story being told in numbers?
So much else is in the balance — a young woman's health, her future, her social life — losses that can be tabulated in virtually every facet of her existence.
But all of it is connected to the lifeline of employer-provided health insurance, which can no more be cut off than the flow of those Synthroid injections.
''As far as getting personal insurance, those big medical companies — they want to cover less and less,'' Christine says. ''Medications are consistently being dropped. . . . I think there isn't a month that goes by that I don't get some sort of mailing that says, 'OK — this has been dropped, and this changes, and if you want to get this prescription, then it has to be done this way.' They just make it as difficult as humanly possible. 'Oh, you can't get it at your pharmacy, it has to be mailed in, and yadda yadda yadda.' ''
Meanwhile, Mary Kay, the mom with the insurance license, feels strongly that the American system needs to change, to attach health insurance more to the individual, and less to his or her employment.
''We just don't live in the age anymore where people start out with a job just out of high school and stay with that job till retirement,'' she says. ''When (insurance) is attached to you, it goes with you, wherever you go and whatever you do. Insurance is, by definition, the pooling of money by many for the individual, so everyone contributes to everyone's costs, and you can take it when you need it.
''Companies take insurance as a tax deduction. If people could also write off their health insurance, take it as a tax deduction, I think you would have more coverage for people and they would have some control.''
Looking forward
This summer will represent some important rites of passage for the Gurbis family. Carrie will get married. Christine will try to move back out on her own. Al and Mary Kay will begin again to talk about scaling back from a demanding business.
Christine is looking ahead again, for the first time since cancer entered her life. She has had to acknowledge some difficult truths about cancer. That when it enters your life in your 20s, you find that no one your age wants to deal with it. Their own lives are moving forward so quickly that they can't stop to dwell on the tragedy of yours. By the time you look around again, they're gone.
She touches the scar on her neck. Yes, she admits, even with the love and care of her family, she feels alone.
This line across her throat continues to tell a story, of a life that will be led forward by her cancer, of a woman who will always be tethered to whatever can provide medical insurance, of possibilities that will forever be guided by the facts of her health and the question of whether she beat cancer or just learned how to outrun it, knowing she can never stop.
David Giffels is a Beacon Journal columnist. He can be reached at 330-996-3572 or dgiffels@thebeaconjournal.com
As she talks, Christine Gurbis unzips a teal vinyl bag that looks like a makeup case and she removes four glass vials — three brown and one clear — along with two needles and a syringe.
She sets them before her on the family kitchen table, lined up like captured chess pawns.
She and her father are talking about her sister Carrie's upcoming wedding, and it's as though the needles and the chemicals aren't even there. Like the act of breathing, they are vitally mundane. These thrice weekly injections in her backside, usually administered by her mother, Mary Kay, keep her life something like normal, which is another way of saying Christine's life is not normal.
''Her mother's quite good,'' Al Gurbis says of his wife's skill with a syringe, in a tone that might just as easily describe her facility with a bundt pan. ''Very seldom does she bleed.''
Christine twists one of the needles into place and jabs its tip through the rubber top of the saline bottle, drawing back the stopper to extract a milliliter of the liquid, which she then squirts into the first brown bottle, liquefying the powder inside. She repeats this two more times, never losing pace with the conversation, shaking each of the three bottles to mix the solution. When she is finished, she draws the contents of each vial back into the syringe, which now contains the day's dose of Synthroid to replace the hormone that is supposed to be secreted by the thyroid gland.
Christine doesn't have a thyroid gland. Instead, she has a long scar across the front of her neck, a pink line that tells the story of her raw deal with cancer. It traces the story of a young woman's life — of an entire family's life — that changed completely and forever when Christine asked her doctor about a lump at the base of her throat.
Here's what cancer did:
It wrenched an independent, emerging young woman from her place in the world back to a bed in her parents' house.
It cost her a good job with benefits.
It knocked her out of college 12 credits shy of graduation.
It alienated her friends and left her nearly alone.
The cancer is gone, but so is the thyroid, meaning Christine will never be ''cured.'' These injections, or some version of them, will be with her forever.
This is what treating the cancer did:
It led the family on a chase after insurance: maintaining Christine's policy meant paying premiums that rose from about $20 a month in the fall of 2003 — when she was diagnosed — to nearly $800 by mid-2007 — when she'd nearly run out of affordable options.
It cost the family at least $110,000 more in additional medical costs, the money sucked from savings.
It sidetracked her 65-year-old father's retirement, which would have begun this year.
It forced the Gurbises to restructure their family business to accommodate a daughter whose chronic disease affects when and how she works.
A financially comfortable family with all the resources one might hope for — including a mother with an insurance license and an unusually refined understanding of the health-care system — was tested to its limits.
If they struggled to get through it, what does that say for the rest of us?
Costly injections
This stuff burns the skin pretty harshly, so Christine removes the syringe she used for mixing the injection and replaces it with the clean one. The used needles go into a Gatorade bottle on the kitchen counter, emptied of its original contents and now filled with the byproducts of her injections. When it fills up, it goes into the trash.
Each injection costs nearly $100; Christine's out-of-pocket expense is close to $30. The amount is significant because it is part of a sweeping, ongoing and complex formula that has been tended by this family carefully, sometimes bitterly and always with the awareness that it is as much a thing to be treated as the cancer itself.
This wedding that they're talking about — it's a complicated subject for Christine. She is the maid of honor. She will, a week after this conversation, sit in the living room amid the swirl of a wedding shower, a room that has been newly carpeted in time for this event, a domestic detail of ceremony that underscores the importance of this summer for the Gurbis family.
She is happy for her sister, thrilled, even. And not resentful, not of Carrie. But still. She is a young woman standing off center as a chief attendant to something she expected for herself someday and now can't see happening.
''Hell, I'm 30 years old and I'm at home with my parents,'' she says, then adds sardonically, ''maybe I'll start dating some guy who doesn't mind needles.''
Her cancer proves chronic in new ways every day.
Christine and her mother disappear through a door off the kitchen. They return with another empty syringe.
Families vulnerable
This is the story of how one family met the challenges of a disease and its attendant costs, the ways it had to cling to an insurance plan that itself was barbed deeply into a job that cancer made unworkable. It's a story of ironies and paradoxes and Catch-22's.
It's the story of a fear that lies dormant in every family, the specter of a medical catastrophe and how it came tumbling down into reality. But even without the tragedy of the illness, the costs and requirements of health insurance are at the forefront of American burdens, perched heavily alongside fuel and heating costs, credit debt and the mortgage crisis.
The plight of the uninsured is marked, with the National Coalition on Health Care reporting nearly 47 million Americans without health insurance. But having insurance has become a burden of its own, with drastically increased premiums and out-of-pocket expenses.
The latest figures from the U.S. Department of Health and Human Services show health-care spending made up 16 percent of the nation's economy in 2006. That works out to $7,026 for every man, woman and child — more than four times the 1970 amount, adjusted for inflation.
Ohio fared worse. The state's per capita spending for personal health care, which includes hospitals, doctors, nursing homes and drugs — was 8.4 percent higher than the U.S. average in 2004.
Dealt a bad hand
The maddening thing, the thing that sometimes pounds against Christine's mind when she lies awake at night, is just how random it all was.
She was a young woman, then 24, at the beginning of her adult life, studying business and marketing at the University of Akron and working full time in title loan documentation for National City Bank, where she had been employed since late 2002.
She had friends, a busy social life, a sister two years older with whom she could share her dreams and ideas of where their lives were headed.
She was a dancer, a tennis player, a swimmer, an unusually healthy eater; she talks about radishes like some people talk about chocolates.
She and Carrie had moved home temporarily after ending the lease on their apartment. Carrie was able to move on, but Christine stuck close to home while she underwent tests for ongoing health problems.
In the early fall of 2003, she went to see her doctor about a lump she'd been feeling in her throat that looked and felt like an Adam's apple. She'd had nagging medical problems — endometriosis, tonsils that had to be removed, trouble swallowing — but was always healthy enough to bounce back. She assumed the lump was related to some part of this.
The doctor performed exploratory surgery. By the end of October, he'd removed half of Christine's thyroid gland.
Doctors don't like to remove the entire thyroid if they don't have to. The butterfly-shaped gland controls a sensitive flow of hormones, acting like a control center for the body's metabolism. People operating without a thyroid can suffer memory loss, exhaustion, depression, weight gain and other problems.
But soon, the question of whether the other half of Christine's thyroid could be saved was answered. A biopsy came back. She had cancer.
Insurance paradox
At the time of her diagnosis, Christine was covered under National City Bank's Medical Mutual policy. The coverage, she says, was excellent. And affordable — her employee share was a little over $20 a month.
But her two operations and the effects of her radiation sessions made it difficult to work. She'd taken a short-term disability leave for the first surgery and would need another for the second.
A paradox was emerging, one she'd faced before. Five years earlier, when she was in college full time and covered by her parents' insurance as a dependent, she had tonsil surgery. The operation and recovery made it impossible to attend classes. But if she didn't attend classes, she'd lose her status as a student, and if she lost her status as a student, she wouldn't qualify for coverage.
Her parents had arranged to take her on as an employee to continue her coverage, a stopgap that allowed her to step out on her own, into the bank job, without an interruption of benefits.
But now she was faced with the real prospect that a long fight with cancer might make her unable to work. And if she had to quit her job, she'd lose her insurance. Complicating matters was that if she broke the continuity of her coverage, her cancer would become a pre-existing condition, which would make it difficult and very expensive to obtain new insurance.
For about a year, despite the heavy toll of radiation and the effects of adjusting to life without a thyroid, she managed to keep her job. But she was suffering from exhaustion, insomnia, memory loss and depression, still trying to find the right mix of medications to replace the functions previously regulated by her thyroid. Her hair was falling out. Her eyes were always swollen.
One day, for all her trying, she collapsed with fatigue at her desk. She was losing the fight, and she was compromising her recovery by pushing herself.
But her job was the only way for her to maintain medical insurance. She couldn't qualify for disability. She felt stranded.
In October 2004, she resigned from the bank and took her coverage into a COBRA plan, which would allow her to continue to benefit from group insurance, but at a much higher rate. Her monthly payment rose to $187.61.
She had moved back home. Ironically, the Gurbises had bought their house in a Copley subdivision because it could accommodate Mary Kay's ailing mother. Now, her mother had died and instead the extra room was occupied by their daughter.
In early 2005, her insurance premium rose to $299.50. By the beginning of 2006, the COBRA plan had risen to $378.25.
And that didn't account for the constant added costs of prescriptions, doctor visits, lab work and other expenses, the additions sometimes rising to $1,200 a month. With blood samples and lab reports zigzagging from one specialist to another, she'd sometimes get bills from hospitals she'd never even been to and be left wondering how she fit in the middle of a system she couldn't understand.
The trial-and-error cycle of her medications has left her with a plastic bin under her bed, the kind some people use to store their childhood toys, filled with prescription bottles.
''I'm a fairly intelligent person, but there's so much to it,'' Christine said. ''Your hair's falling out; you're crying; you haven't slept for a week. You're just getting bill after bill, and you don't even know where it came from.''
But even the high-cost COBRA plan would keep costs manageable only for 18 months. She had to find a long-term solution for a chronic disease.
Middle-class family
Al and Mary Kay Gurbis met in 1970, when they were both working for GMAC in Cleveland, he in finance and she in insurance. They met over the phone in the course of their work; the conversations grew into a romance, and they married in 1973.
Ten years later, with two young daughters, they decided to break out on their own. They formed A.J. Gurbis & Associates, a company selling extended warranties and other aftermarket insurance and financing products to auto dealers.
The company grew to include 13 employees. With no ongoing contracts, it was demanding work, a constant churn with steady regional travel and long days, but they did well and provided a good living for their family.
Many of their hopes for their children were fulfilled. Both daughters went to college; the girls had a close relationship, sharing an apartment in Akron as they grew into young adults.
By the time Christine got sick, Al and Mary Kay were settled into a new life as empty-nesters, planning their retirement and considering the future of their business. The industry had changed and they now ran the operation themselves, from a basement office.
By 2005, the question of their daughter's insurance had changed everything.
Christine was living at home, still struggling to find the right balance of medications, swinging from insomnia to an exhaustion that sometimes had her sleeping 20 hours at a stretch.
She was going to need to restart her career in a way that could include some flexibility for her health. After an arduous process of trial-and-error, Christine had found the Synthroid injections that did the best job of replacing the hormones normally produced by her thyroid. But she was hardly back to normal. With no thyroid, her condition is chronic, and the injections give only the approximation of health.
Joining the company
In mid-2006, Christine's COBRA coverage reached its end. Her monthly insurance payment jumped to $659.63, which her parents were paying.
The family decided that the best option was to hire Christine as an employee of A.J. Gurbis & Associates.
Although her background in banking and consumer loans did suggest she had something to contribute, it's not a choice Christine would have made otherwise. Neither she nor her parents ever expected one of the children to enter the company. But the decision had little to do with anyone's career plans. Christine needed insurance and stability.
She was hired in April 2007 to handle a variety of duties, including training dealers on Web-based programs, a key part of the company's 21st-century function.
By then, her Medical Mutual insurance premium had risen to $781. She needed to weather one last storm, to endure a three-month probationary period, before she could go onto the company's insurance plan.
Finally, last August, Christine Gurbis, newly minted as a service representative with the A.J. Gurbis & Associates Agency, moved onto the company'sSummaCare plan, at a cost of $273.36 a month, her premium covered by the company.
This would seem like a great relief, but everything in their life is relative.
As Mary Kay jokes: ''Every morning, I thank God she's still alive. But, yeah — she does get expensive.''
Tied to employers
Why is this story being told in numbers?
So much else is in the balance — a young woman's health, her future, her social life — losses that can be tabulated in virtually every facet of her existence.
But all of it is connected to the lifeline of employer-provided health insurance, which can no more be cut off than the flow of those Synthroid injections.
''As far as getting personal insurance, those big medical companies — they want to cover less and less,'' Christine says. ''Medications are consistently being dropped. . . . I think there isn't a month that goes by that I don't get some sort of mailing that says, 'OK — this has been dropped, and this changes, and if you want to get this prescription, then it has to be done this way.' They just make it as difficult as humanly possible. 'Oh, you can't get it at your pharmacy, it has to be mailed in, and yadda yadda yadda.' ''
Meanwhile, Mary Kay, the mom with the insurance license, feels strongly that the American system needs to change, to attach health insurance more to the individual, and less to his or her employment.
''We just don't live in the age anymore where people start out with a job just out of high school and stay with that job till retirement,'' she says. ''When (insurance) is attached to you, it goes with you, wherever you go and whatever you do. Insurance is, by definition, the pooling of money by many for the individual, so everyone contributes to everyone's costs, and you can take it when you need it.
''Companies take insurance as a tax deduction. If people could also write off their health insurance, take it as a tax deduction, I think you would have more coverage for people and they would have some control.''
Looking forward
This summer will represent some important rites of passage for the Gurbis family. Carrie will get married. Christine will try to move back out on her own. Al and Mary Kay will begin again to talk about scaling back from a demanding business.
Christine is looking ahead again, for the first time since cancer entered her life. She has had to acknowledge some difficult truths about cancer. That when it enters your life in your 20s, you find that no one your age wants to deal with it. Their own lives are moving forward so quickly that they can't stop to dwell on the tragedy of yours. By the time you look around again, they're gone.
She touches the scar on her neck. Yes, she admits, even with the love and care of her family, she feels alone.
This line across her throat continues to tell a story, of a life that will be led forward by her cancer, of a woman who will always be tethered to whatever can provide medical insurance, of possibilities that will forever be guided by the facts of her health and the question of whether she beat cancer or just learned how to outrun it, knowing she can never stop.
David Giffels is a Beacon Journal columnist. He can be reached at 330-996-3572 or dgiffels@thebeaconjournal.com

