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What do I do if I have to leave my job?
• Immediately after leaving, you can extend your health insurance for 18 months under COBRA, the federal law that includes a temporary-insurance program. When you are employed, both you and your employer usually pay a portion of the cost of your health insurance; with COBRA, patients usually pay both portions, so month-to-month costs will likely go up if you enroll.
If your medical problems prevent you from returning to work—any type of work, not just the job you leave—you can apply for disability pay through Social Security. If you and your doctor decide together that you will be out of work for more than a year, you should consider applying for Social Security disability. Rabin suggests you hire a lawyer with expertise at the beginning of the process. (Lawyers working on Social Security disability cases are paid a portion of the eventual payments, so you are not on the hook for fees if you ultimately get denied.)
Disability should be a last resort. “It’s always better to work than be on disability,” Rabin says.
How should I tackle the insurance bills that arrive?
• “Open ’em,” says Erin Schneider, an American Cancer Society patient navigator at Rush. Letting the envelopes stack up in a deal-with-later pile is tempting, but that approach can quickly lead to collections notices. “It’s like anything else: Put something aside and then it grows into something really big,” says Susan Loeb, the benefits advocate. “Procrastination gets to be costly.” It doesn’t help that many of the papers that arrive are covered in abstruse abbreviations and frighteningly large dollar amounts but no instructions for you. Here is the quick-and-dirty summary of what it all is:
The hospital tracks what it has provided and sends a statement showing base charges. The insurer reduces these charges according to contracts with the medical providers. Of the remaining amount, the insurer pays the provider a portion, according to your personal insurance plan. The insurer should then send you an “explanation of benefits,” indicating how much is still owed. Soon afterward, the provider should send you a bill for this unpaid balance. It’s a lot of mail.
Loeb suggests organizing it by date of service, which is the date you actually received the care mentioned on all the statements. The computer-savvy might track it all with a spreadsheet, to see more information at a glance. If you are looking to simplify this mountain of paper, Schneider suggests looking only for bills with the tear-off portion and instructions on sending payment: “If it doesn’t say you have to pay, just ignore it.”
For people who feel buried by the paper, there are services for hire that can review the claims for you. They tell you what to pay when you have been billed accurately, and they call the insurance company to resolve errors or appeal denials. Locate one near you through the Alliance of Claims Assistance Professionals’ Web site at Claims.org. In some cases, the money a professional saves a patient in errors spotted or denials reversed can pay their fee. Most claims assistance professionals charge between $60 and $100 an hour.
What should I expect during follow-up care?
• Follow-up care presents its own problems. Many patients don’t foresee the continued anxiety they feel after they have been pronounced disease-free. “Some people have significant emotional scars. Some people may be physically changed,” says Richard Schilsky, an oncologist at the University of Chicago. “All those things can affect people’s relationships.” He says some studies have shown that cancer survivors can experience a condition similar to posttraumatic stress disorder.
“There may be that anxiety at scans and at follow-ups,” says Gauthier, the Rush psychologist. “Even after [patients] are finished with treatment, they’re always going to deal with some of this uncertainty.” Treatment offers regularity and a sense of progress toward beating the illness. Reaching the end of treatment and staring at the unknown that lies beyond it can be unsettling.
Know how to reach your doctors in case you are worried about symptoms after treatment. Keep going to a support group, if you have joined one; if you haven’t, there’s nothing stopping you from doing it now.
Most important, follow your doctors’ advice about when to schedule return appointments. Continue to see specialists periodically.
And figure out what is normal for you now. It may not be the same as before you were diagnosed, but different isn’t always worse. It can even be better. “It’s very easy to focus on the difficulty—which one can’t deny,” says Tobin, the psychiatrist at the U. of C. “It can also be an incredible time of personal growth, a time of bringing families together.” Sickness insists that we recognize human frailty, but more quietly, it reveals human beauty through generosity, charity, and warmth. It’s often the paradox of illness that when you look back at a period that was dominated by pain, what you see first is love.
illustrations: Harry Campbell