Cancer Survivor: To Fight Is to Live

Cancer is really great material to work with. The comedienne Tig Notaro discovered this after making cancer part of her routine. (Opening line, “Hello, I have cancer. How are you?”) Dozens of people in my profession—which always had way too many smokers—wrote themselves into the grave, some quite elegantly. After my own cancer diagnosis, I swore I wasn’t going to write myself into the grave if the chemo and the surgery didn’t stop the disease. Nor was I going turn my disease into magazine fodder.

Then, not long after I returned to work, a cancer story popped up that was directly related to my treatment, and the managing editor asked me if I was interested. I hesitated. How many pages, I inquired. Four. “I’m in.” As a journalist, you have to work with what the news gives you–and take all the space you can get.

So I began to write about cancer, especially cancer research, occasionally revealing details of my own illness. I thought it would serve the reader. I took part in a drug study and urged other cancer patients to at least explore the trials available to them. Being a lab rat, it turns out, you get a little extra attention, too. And having been a customer gives you a certain amount of journalistic leverage with the scientists and physicians you are covering. They may know the biology of the disease (or some of it, cancer is monstrously complicated); but I lived it. I occasionally hear from readers seeking advice on treatment options, or about the surgery (horrible), about the hospitals where I was treated. I try to help them as best I can.

Lisa Bonchek Adams has also been sharing her case information, in more than 160,000 tweets that this Connecticut mother of three has posted since she started down cancer’s path seven years ago. Adams has taken part in a drug trial at Memorial Sloan Kettering Hospital in New York City, in an effort to treat her breast cancer that had advanced to stage IV and spread to other organs. She’s in desperate shape, hanging in and blogging hard.  “I gather up my pump cords, release myself from the wall’s grip. I walk, counter-clockwise around the nurse’s station with a vengeance, trying to push the pain and discomfort away,” she posted recently. I recognize that  pain; and that walk.  If you are walking you are not dying; I think I set the record for laps around the floor of the hospital, where I was treated.

Her relentless tweeting recently got the attention of Emma and Bill Keller—he’s the former New York Times editor turned columnist; she writes for the UK’s Guardian—who each tried to address some touchy issues with what critics thought were lead fingers. Mr. Keller suggested that his father-in-law’s quiet, no-heroic-measures taken death from cancer might have something to offer to U.S. healthcare providers, given the enormous cost of end-of-life care. Every battle can’t be fought to the last soldier, Mr. Keller suggested, and Adams’ daily battle briefs were raising false hopes about the benefits of experimental drugs. As for Adams herself, he wondered whether her blog was more about her than a public service to cancer patients. “Social media have become a kind of self-medication,” he wrote, bloodlessly. Mrs. Keller explored the idea that Adams was oversharing: “Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?”

Go ahead and just die already, was the takeaway, unfairly or not. The outrage within the cancer and journalism communities was such that the Guardian pulled the plug on Mrs. Keller’s story .

Having once experienced stage IV cancer, I understand Adams’ desire to fight it with every drug that Memorial can throw at her. If they had told me to drink mercury I would have asked for a double—and keep in mind that in many drug trials that is essentially what’s going on: You get dosed with poison while the clinicians try to guess whether the poison will kill you or the cancer first. But patients are fully informed. No one—especially not doctors—administers under the delusion that these are miracle drugs. Cancer treatment is still a three yards and a cloud of dust offense. The gains are small but they keep coming, which is why the trials need to be ongoing. And compared with the trials of decades past (read Siddhartha Mukherjee’s The Emperor of All Maladies for the horrifying accounts) the drug protocols are at least humane.

I also understand Adams’ desire, if not her need, to share her world with the blogosphere. It’s the literary equivalent of pacing the hallways. Or affirming that you are still here.  My approach took a different format. I worked out like a maniac and continued to play basketball and soccer until the day before my surgery. Every dribble seemed like I was adding a day to my life. It was all completely irrational but you do what you can to stay sane.

Adams posts are completely rational, and some are completely compelling. Whether hers is a hopeless case at this point isn’t for the Kellers to decide, or even debate for that matter. If you are not interested in Lisa Adams’ radiation treatments, or anyone else’s, by all means go back to your cat photos if that’s what you like. It’s a big web. But people like Adams are going to become more numerous because cancer has outlasted other diseases to become our top killer. Cancer will kill more than 500,000 people this year, even as the funding for the National Cancer Institutes got cut in last year’s political knife fight.  Adams will remind us, until her last breath it seems, that this is a war we are still losing.

What Obamacare Means for Corporate Retiree Insurance Coverage

The news that Time Warner and IBM are changing retiree health-insurance benefits has some claiming the moves are proof that the Affordable Care Act (ACA) is drastically eroding the employer-based health-insurance system it promised to preserve and increasing costs for retired corporate workers in the process.

In truth, corporate America was already looking for ways to trim health-insurance costs, particularly for retirees, long before Obamacare came along. The benefit decisions announced by IBM and Time Warner have little direct relationship with the health care law and will not, as some have suggested, leave retirees without any insurance.

The changes at IBM relate to supplemental health benefits for retirees who already receive Medicare through the federal government. Rather than administer these additional benefits for company retirees over 65, IBM will direct former employees to a Medicare-specific insurance exchange, or marketplace, and subsidize the cost of this extra coverage. Retirees will have to participate in choosing their supplemental plans, but will ultimately have more options, according to IBM. Time Warner, the parent company of TIME, will give retired employees too young to qualify for Medicare subsidies in order to purchase coverage on their own through private exchanges that are separate from the public insurance exchanges that will open Oct. 1 as part of the ACA.

Nationwide, companies have been making similar changes for many years. According to the nonpartisan Kaiser Family Foundation, in 1988, 66% of companies with 200 or more employees that offered insurance benefits to active employees also offered retiree health benefits. By 2008, two years before the ACA became law, the figure had dropped to 29% and is currently 28%, according to Kaiser. In 2009, a year before the ACA was signed, Xerox eliminated supplemental health benefits for retired workers who qualified for Medicare. The decision drew a lawsuit from retirees, but a federal judge ultimately ruled that the group had no legal claim against the company. “It had nothing to do with Obamacare,” says James Marino, a lawyer for the Association of Retired Xerox Employees, which filed the lawsuit.

Although Obamacare is not directly responsible for corporations cutting back and altering benefits for retirees, the law won’t do much to slow this trend. In fact, it could indirectly increase costs for companies that might, in turn, look to retiree benefits to cut spending. The law sets a minimum floor for what medical care health-insurance plans must cover. Although many corporate health-insurance plans were grandfathered in and exempted from complying with these requirements, the exemption disappears if companies make significant changes to their health-insurance offerings, which is common. Architects of the law say it will reduce the growth of overall U.S. health care spending and costs for individual medical treatments and procedures, which could reduce costs for employers, but it will be years or even decades before this promise can be evaluated on the merits.

And with the law’s public health-insurance exchanges scheduled to launch in just a few weeks, companies can point to them as viable alternatives to company-sponsored retiree coverage. Retirees in their late 50s and early 60s who don’t yet qualify for Medicare and are generally sicker than their younger counterparts currently face some of the highest health-insurance premiums in the individual marketplace. Under the ACA, insurers will no longer be able to charge these people higher rates based on health status, but the law does allow premiums to be set by age. Insurers will be able to charge the oldest enrollees in any given health plan three times as much as the youngest enrollees.

Still, for similarly aged retirees without any subsidies from their former employers — like those who worked independently or for small businesses — the Obamacare exchanges, which will offer public subsidies to low- and middle-income Americans without job-based coverage, could give the first real chance at finding affordable health insurance.

A Nation In Need of A Pick-Me-Up: Our Need for Caffeine

I love my coffee and I often drink an energy drink (or two) in the afternoon. Should that be cause for health concern!?

How could the energy drinks, whose main ingredient is caffeine, be connected to the deaths? Andrea Giancoli, a registered dietitian and spokesperson for the Academy of Nutrition and Dietetics, and Michael Jacobson, executive director of the Center for Science in the Public Interest, answer some questions worried consumers are asking about the beverages.

How does the body respond to caffeine?
“It’s a stimulant. It wakes you up. It makes you more alert. It is stimulating your nervous system,” says Giancoli. Giving the nervous system a jolt can lessen fatigue and sometimes improve mood. As heart rates go up, the body circulates more blood and can speed up the metabolism.

What are some of the adverse effects of caffeine?
If you’re not used to the amount of caffeine you’re consuming, you can feel jittery. “You can get heart palpitations and feel agitated and nervous and like you’re bouncing off the walls,” says Giancoli. “You can feel your heart pounding very quickly, and your blood pressure goes up. Imagine if your body were undergoing this, times 10. It would land you in the emergency room. Your heart can only handle so much, and you are probably going to pass out.”

How much caffeine is too much?
“Typically we would say 300 to 500 mg is safe for most people — not that people need that much or want that much — it’s about three to five cups of coffee,” says Giancoli. “There are people who can drink much more than that. Some people can drink a whole pot of coffee a day and have no problem. Then you hear about people who cannot retain caffeine at all and have one cup, and they’re flying off the walls.” Giancoli says people can become accustomed to high amounts of caffeine over time, so the effect in enhancing alertness and improving energy may dwindle in heavy and frequent consumers compared with those who rarely drink caffeinated beverages.

Why are the amounts of caffeine in energy drinks unlabeled?
The FDA currently does not require caffeine amounts to be listed on food labels. Caffeine is not considered a nutrient and therefore only needs to be listed as an ingredient. The FDA does not regulate energy drinks because they are sold as dietary supplements. If the FDA did regulate them, most would have levels of caffeine higher than what the agency deems safe. The agency currently allows sodas to contain 71 mg of caffeine per 355 ml. According to the FDA, energy drinks contain from 160 to 500 mg of caffeine per serving. A recent Consumer Reports test of 27 best-selling energy drinks found that 11 do not list caffeine content, and among those that do, the tested amount was on average 20% higher than what’s listed.

Is it possible to die from caffeine?
Overdoing caffeine alone is actually pretty difficult to do, says Jacobson. “It’s highly unlikely. Someone would really have to make an effort to consume 40 or so 200-mg caffeine tablets.”

Is it only the caffeine found in energy drinks that are the main concern, or are other ingredients playing a role?
“There just hasn’t been enough studies done on the other ingredients,” says Giancoli. “The problem comes when there is a massive amount of caffeine. Some of these drinks are very concentrated with caffeine for a very small amount of liquid. It would be easy to drink many of these in a row.” She says some teenagers drink a large amount of high-energy beverages to get a buzz and also mix the drinks with alcohol. “It’s the excessive intake that we are concerned about,” says Giancoli. “There is a part of the population that has underlying heart conditions that cannot handle that amount of caffeine. We want to be really careful with that group of people. They would not do so well on that dose of caffeine. But if anybody has 40 cups of coffee you will be in trouble.”

From a nutritional standpoint, should we be curbing our caffeine consumption?
“Not necessarily. People have been drinking these energy drinks for a long time now, and for much longer than other beverages that have caffeine in them, without harmful consequences. And in fact, there have been healthy consequences that have come out of research of regular coffee consumption,” says Giancoli. “Caffeine doesn’t necessarily need to be avoided, it’s these massive amounts that we are concerned about and particularly in kids when they’re trying to get buzzed. That’s when we really become worried.” For most people, caffeine in moderation is safe. Some sources of caffeine like coffee may also have additional health perks like lowering inflammation, which can contribute to heart disease, so safe amounts could be beneficial. “For coffee drinkers, the real issue we are concerned about is, Do you have trouble sleeping? If you do, maybe you do need to cut down on your caffeine. Are you agitated? Do you have stress that might be related to being jumpy from caffeine? If you do have symptoms that could be related to caffeine, then maybe you need to be tapering down. As far as avoiding it altogether, that’s not necessarily something we need to be doing if we can tolerate it. If we enjoy that cup of coffee there is no reason we shouldn’t drink it,” says Giancoli.

13 Reasons Tea Is Good for You

I am so glad I prefer tea over coffee simply for the many health benefits! I'm going to go get my tea on . . . all of you should to! 

Put down those saucer cups and get chugging — tea is officially awesome for your health. But before loading up on Red Zinger, make sure that your “tea” is actually tea. Real tea is derived from a particular plant (Camellia sinensis) and includes only four varieties: green, black, white, and oolong. Anything else (like herbal “tea”) is an infusion of a different plant and isn’t technically tea.

But what real tea lacks in variety, it makes up for with some serious health benefits. Researchers attribute tea’s health properties to polyphenols (a type of antioxidant) and phytochemicals. Though most studies have focused on the better-known green and black teas, white and oolong also bring benefits to the table. Read on to find out why coffee’s little cousin rocks your health.

1. Tea can boost exercise endurance. Scientists have found that the catechins (antioxidants) in green tea extract increase the body’s ability to burn fat as fuel, which accounts for improved muscle endurance.
2. Drinking tea could help reduce the risk of heart attack. Tea might also help protect against cardiovascular and degenerative diseases.
3. The antioxidants in tea might help protect against a boatload of cancers, including breast, colon, colorectal, skin, lung, esophagus, stomach, small intestine, pancreas, liver, ovarian, prostate and oral cancers. But don’t rely solely on tea to keep a healthy body — tea is not a miracle cure, after all. While more studies than not suggest that tea has cancer-fighting benefits, the current research is mixed.
4. Tea helps fight free radicals. Tea is high in oxygen radical absorbance capacity (“ORAC” to its friends), which is a fancy way of saying that it helps destroy free radicals (which can damage DNA) in the body. While our bodies are designed to fight free radicals on their own, they’re not 100 percent effective — and since damage from these radical oxygen ninjas has been linked to cancer, heart disease and neurological degeneration, we’ll take all the help we can get.
5. Tea is hydrating to the body (even despite the caffeine!).
6. Drinking tea is linked with a lower risk of Parkinson’s disease. When considered with other factors like smoking, physical activity, age and body mass index, regular tea drinking was associated with a lowered risk of Parkinson’s disease in both men and women.
7. Tea might provide protection from ultraviolet rays. We know it’s important to limit exposure to UV rays, and we all know what it’s like to feel the burn. The good news is that green tea may act as a back-up sunscreen.
8. Tea could keep waist circumference in check. In one study, participants who regularly consumed hot tea had lower waist circumference and lower BMI than non-consuming participants. Scientists speculate that regular tea drinking lowers the risk of metabolic syndrome (which increases the risk of diabetes, artery disease and stroke), although it’s important to remember that correlation does not equal causation.
9. Regular tea drinking might also counteract some of the negative effects of smoking and might even lessen the risk of lung cancer (good news, obviously, but not a justification for cigs).
10. Tea could be beneficial to people with Type 2 diabetes. Studies suggest that compounds in green tea could help diabetics better process sugars.
11. Tea can help the body recover from radiation. One study found that tea helped protect against cellular degeneration upon exposure to radiation, while another found that tea can help skin bounce back postexposure.
12. Green tea has been found to improve bone mineral density and strength.
13. Tea might be an effective agent in the prevention and treatment of neurological diseases, especially degenerative diseases (think Alzheimer’s). While many factors influence brain health, polyphenols in green tea may help maintain the parts of the brain that regulate learning and memory.

Though most research on tea is highly positive, it’s not all definitive — so keep these caveats in mind before stocking up on gallons of the stuff:

1. Keep it cool. Repeatedly drinking hot beverages may boost the risk of esophageal cancer. Give tea several minutes to cool off before sipping.
2. The studies seem convincing, but a rat does not a human make. Chemicals in tea may react differently in the lab than they do in the human body. Tannins (and the other good stuff in green tea) may not be bioavailable for humans, meaning tea might not always benefit human health to the same degree as in lab studies suggest.
3. All tea drinks are not created equal. The body’s access to the good stuff in tea might be determined by the tea variety, canning and processing, and the way it was brewed.

The takeaway: at the very least, tea should be safe to consume — just not in excessive amounts. So brew up a batch of the good stuff — hot or cold — and enjoy.

Child eating disorders on the rise

Swimming outdoors, playing with the family pet and enjoying an ice cream cone -- that is the summer life of a typical 9-year-old girl.

Not for Sarah Smith. As a child, Smith (whose name has been changed to protect her privacy) formed habits that would eventually lead her to develop both bulimia and anorexia nervosa, both of which she is still dealing with today.

Smith remembers her parents using food in a reward-punishment system. When she was good, she got treats; if she was bad, snacks were forbidden.

"I think there was a mixture of ... intentionally restricting my food and then going to try to find the food my parents were hiding," Smith said. "Even in childhood, it became sort of obsessive."

When Smith was born in 1989, child eating disorders were a rarity. Today, they are far more commonplace.

A study conducted by the Agency for Healthcare Research and Quality showed that hospitalizations for eating disorders in children under 12 increased by 119% between 1999 and 2006. More recent numbers are unavailable, but experts say the problem isn't getting any better.

Children will come in to her office already showing signs of malnutrition, dietician Page Love says. They often have low energy levels and low iron counts and are reporting hair loss because of their extreme weight loss.

Most, like Smith, do not recognize that their restrictive habits are actually an eating disorder that could ultimately be fatal.

Dina Zeckhausen is a psychologist and founder of the Eating Disorder Information Network. She sees kids in third and fourth grade who are already worried about being fat.

"There is so much emphasis on obesity," Zeckhausen said, "that there's a danger that we are going to produce a lot of anxieties in kids around weight."

Zeckhausen says that starting overweight kids on diets can trigger an obsession with food that could lead to an eating disorder. She recommends putting overweight children in a sport or becoming more active as a family and providing healthier food options.

Children at risk of an eating disorder share similar personality traits: high anxiety, perfectionism and obsessive-compulsive tendencies, according to Zeckhausen. They are also often subject to external pressures such as school bullying, abuse or a divorce. Restricting food intake is a way for a child to feel in control of their life.

"The eating disorder is the voice," said Love. "The eating disorder is a way to communicate (and say) 'I'm struggling. I'm hurt. I need help.' "

Smith's parents did not realize there was something going on until she was 13; her eating disorder was not professionally addressed until she was 17. As a result, Smith has been in and out of treatment facilities practically her whole life.

Experts say that getting help at a young age is the key to effective treatment.

"The longer an eating disorder goes on, the more potential physical and psychological damage can occur," Zeckhausen said. "It's particularly important to be in recovery before puberty begins so the child can accept and cope with the normal weight gain of puberty."

Love says that a lot of the time, she meets parents who say, "I didn't realize my child had lost this much weight until I saw them in a bathing suit."

"Unfortunately, some of these parents don't notice this weight loss until it's already significant," Love added.

A sudden change of portion size, cutting out foods the child enjoyed in the past, avoiding fat calories and sudden weight loss are all warning signs that a child is developing an eating disorder.

Smith said her family did not recognize her eating disorder as a problem. Now, a decade and a half later, she is still struggling.

"I think what I would tell them is to do their very best not to fool themselves," Smith said of her advice for children suffering with an eating disorder. "There are people out there, even if they aren't in their direct surroundings, who are filled with compassion and want to help."

Man Receives New Windpipe Made From His Own Stem Cells And Artificial Material

Last month in Sweden, a man suffering from late-stage tracheal cancer received a new windpipe made in the lab from a synthetic scaffold with flesh grown from his own stem cells. This is the first successful transplant in the world of a tissue-engineered trachea that does not use a scaffold made from a donor organ. 

The 36-year-old man is due to be discharged today: he is not taking immunosuppressant drugs because the transplanted tissue was made with his own cells, said the hospital.

The operation took place at the Karolinska University Hospital in Huddinge, Stockholm. Professor Paolo Macchiarini, who works at the Hospital and the Karolinska Institutet, led the international transplant team.

Macchiarini, a world expert in regenerative medicine, has successfully transplanted tissue-engineered tracheas before, for instance at the Hospital Clinic of Barcelona. But those tissue-engineered windpipes used "scaffolds" from trachea taken from organ donors. In those procedures the donated windpipe has the donor cells stripped away, leaving just the extracellular matrix, and then the recipient's stem cells are used to seed new tissue onto the scaffold.

This new operation is a world first because it used an artificial scaffold made from a nanocomposite polymer material (a sort of spongy and flexible plastic made of extremely small building blocks).

Also on the team were Professor Alexander Seifalian of University College London in the UK, who designed and built the Y-shaped scaffold, and members from Harvard Bioscience in Boston in the US, who custom-produced the bioreactor that, in only two days, grew the flesh onto the scaffold from the patient's own stem cells.

The man's cancer had progressed to the point where he needed a transplant but no suitable donor organ was available. The tumor in his trachea was about 6 cm long and beginning to spread to a main bronchus, a tube that leads to a lung. He had received maximum treatment with radiotherapy, but to no avail.

The tissue-engineered option was the only one left to save his life. He was receiving cancer treatment at Landspitali University Hospital in Iceland, under the supervision of Professor Tomas Gudbjartsson who referred him to the Swedish hospital. Gudbjartsson was also on the transplant team.

The successful transplant brings hope to thousands of other patients who have late-stage tracheal cancer or other conditions that block the passage of air into the lungs. Children in particular would benefit from having this option, since child donor tracheas are much harder to obtain.

In a CNN-reported comment to the media about the significance of the operation, Macchiarini described it as a "beautiful international collaboration":

"If scientists and clinicians work together, we can help humanity," he said.

A Different Kind of Spring Cleaning

Take a Fresh Look at Your Health Planning

The beginning of spring is the time for cleaning up and cleaning out. Take a day or a weekend to wash the windows, put away the sweaters and blankets and organize your life after the brutal wintry season. Not only is this the perfect time to clean out your messy closet, but it's also the perfect season to organize your health records.

A quick clean up can have some big payoffs with your health benefits plan; if your records are accurate and organized, you can:

• Prepare and plan for tax season
• Learn new ways to save money by using pre-tax dollars to pay for eligible medical expenses
• Make the right health benefit choices for this time in your life

"The change in season is just the right time to get your health and financial records in order," said Elizabeth Jetton, CERTIFIED FINANCIAL PLANNER professional CFP^®, chair, Financial Planning Association (FPA^®). "This can be a first step toward setting your goals, taking control of your finances and setting up a solid financial plan you'll benefit from for the rest of the year."

Quick & Easy Cleaning Tips

While sweeping under the bed...
Locate medical bills and receipts from doctors' visits during the year — whether paid by you or your insurance company. Next, talk to your tax advisor about any new tax laws that could impact your personal health insurance needs. There have been changes in the tax code in recent years that may influence how families save and pay for health care and long-term care needs. Remember, the deadline to file taxes is April 15.

While dusting the furniture...
Remember that allergy season is fast approaching. See if your trip to the allergist is covered. Also, check with your HR department to determine if you should consider a Flexible Spending Account (FSA) next year. With an FSA, money is taken from your paycheck and put into an account to be used for medical expenses, like allergy medication or contact lenses, throughout the year.

While organizing your office...
Take a moment to review your health benefits plan to make sure that your plan is right for your current situation. For example, having a baby, getting married, taking a new job and starting over are all times when you have an opportunity to re-evaluate your health insurance needs. Some other considerations for when you are sitting in your office chair:

• Think about the aspects of your plan that you utilized the most in the past year and those that you did not
• Be prepared:
  • Review your Open Enrollment packet
  • Understand any changes to your insurance package and how best to use your health benefits
  • Visit your health plan website or your employer's intranet site for information specific to you and your needs
• Keep track of your annual health care expenses including co-payments for doctors' visits and prescriptions

One easy way to track health care expenses is with a good health records filing system. To make your filing system easier and more efficient, separate your files into active (those you refer to often) and inactive files (those you may need at a future date).

Active — what you'll need at your fingertips for easy access and reference. Be sure that more than one person knows where your files are kept in case of an emergency:

• In the event of an emergency hospital or doctor visit, keep a list of current family health records for this year and last year, including information likepre-existing conditions, medications you are taking and family physician name and contact information.
• Insurance policies, with a record of dates and premiums paid (this information may be on your paycheck or another document from your insurance company).
• Medical bills, receipts and papers — whether paid by you or your insurance company — for the current and past year. The current year records will be needed for income tax purposes if you claim medical expenses as a deduction.

Inactive — what you may need in the future, keep on file for tax purposes and reference:

• Medical bills, receipts and papers — whether paid by you or your insurance company — more than two years old.
• Health history records for reference. Create a list that includes: blood type, allergies, immunizations, dates and the nature of all illnesses and injuries, names of doctors consulted, records of hospital and clinic stays, medications prescribed and taken, and dates and types of X-rays and shots. Update the list as needed, based on changes in your health.

Now that you've organized your health records, be sure to maintain your new system throughout the year. Set aside time each week when paying bills or sorting mail to keep your health records organized. When things don't pile up, it's easier to have more time to enjoy spring.